This article is part of an extensive feature on the 2024 HAEi Regional Conference Americas, published in Global Perspectives #1 2024

The Patient and Caregiver Track consisted of many exciting topics – click on a topic to know much more about what went on during the sessions:

This article is part of an extensive feature on the 2024 HAEi Regional Conference Americas, published in Global Perspectives #1 2024

Getting to Know the Americas Region

After the keynote, Fiona Wardman, Executive Vice President Global Advocacy and Chief Diversity Officer, and Jørn Schultz-Boysen, Executive Vice President Global Operations and Chief Compliance Officer, introduced the next sessions that were dedicated to understanding more about the Region.

The region focus kicked off with a special welcome from our Panama hosts before each Member Organization from the region introduced themselves.

Welcome to Panama from the Member Organization and Community

I am Michelle Coronado, a patient and also Secretary of the Panamanian Association of Patients with Hereditary Angioedema. I have been with the group since 2018. Since I met them they have been a great support to manage my disease. We are all like a family, together with Dr Olga Mesina Barrera, who is very supportive and always watching over us and our health. I hope you enjoy the activity. 

As a patient, I highly recommend forming a group with other patients, even creating an association with all its statutes and other documents at a later stage. Having an association gives us a lot of power as a patient, because it will be seen that we are not alone. We are not the only ones and that we know our disease well. 

It is important that the patient knows the disease, knows the medications that exist at the moment, although many times we all do not have them. In other countries there are most of the medicines, sometimes we are not so lucky, But it is important that as a patient we know very well about our disease and how it is managed to let the other doctors know and to defend ourselves when we go to the emergency rooms.

[Speaker #2]

We would like to welcome you to this Regional Conference of Patients with hereditary edema. It is a great honor for us to welcome you to our country. Make yourself at home. At the same time, we would like to thank you for accepting our invitation to participate in this important event.

[Speaker #3] 

Hereditary Angioedema patients in the Republic of Panama deserve a better quality of life. Let’s fight together so that the medicines are and reach their hands at the right time so that they can live a normal life and can perform all their activities and realize their dreams as any person with longings and dreams who wants to live happily.

Hello, I am Dr Olga Melcina Barrera, medical advisor of the Panamanian Association of Patients with Hereditary Angioedema. I have been accompanying these patients for more than three decades and today I am very happy to receive all the members of the Regional Conference of Patients with Hereditary Angioedema who are celebrating this important event in this country. Welcome to all of you. 

Introduction to the Region’s Member Organizations

The spotlight then switched to the Member Organizations across the Americas region, with each group given the opportunity to offer a greeting and introduction to themselves. 


My name is Alejandra Menéndez and I am in charge of the Argentine Association of Hereditary Angioedema.

Our organization formally started its activities back in 2004, making this year our 20th anniversary. 

It has been many years of intense and hard work, but fortunately it was very fruitful and productive, especially in terms of knowledge of the disease, diagnosis, early detection, availability and access to modern treatments.

Back in 2004, when we started, we were just a handful of people beginning this project and today our organization has 582 members and continues to grow steadily. Maybe not as fast as we all would like, but it keeps growing and moving forward, that is the most important thing. It is a pleasure to be here and thank you very much to HAEi for giving us this opportunity.


Hello, I am Josette Hinojosa Espinoza and I am from Bolivia. In our country the group of patients has just been formed the year before last and, so we are still emerging, we still have to recruit many people.

The diagnosis is not common, it is rare. There are very bad diagnoses because this disease is confused, it is difficult to diagnose. I am very hopeful that this group will grow, that this disease becomes visible and that people can have access to treatment and a quality of life.


Hello, my name is Renata and I am from Brazil. We started our group in 2010, with 26 patients registered in the Brazilian Association. Today we have 1916 patients with confirmed diagnosis.


Hello, my name is Jose Ignacio, I am from Chile. Our corporation started in 2022 and currently we have 200 patients registered in our corporation. 


Good morning, how are you? My name is Karen Sanchez, I am from Colombia. The association in our country started in 2020 and at this moment we are approximately 50 people who are part of the association.


Hello, my name is Edison Galarraga and I represent the patients of hereditary angioedema in Ecuador. We started our group in 2013 with only two patients. Soon we were involved in the activities of the HAEi training us to strengthen the group of patients. In the year 2015 we were able to train the first doctor on the management of HAE cases and until the year 2024 we already have four contact doctors in the different provinces.

By 2023 we have managed to locate 66 patients, of which only 22 are diagnosed and the remaining are patients and close relatives who have the symptoms but have not yet been diagnosed. We have little or no access to medicine for prophylactic treatments and no access to emergency medicine. 

In 2023, one of the most important universities in the country started a research project on genetic diagnosis for hereditary angioedema in patients in Ecuador. We also have a CARE-qualified center for research, diagnosis and treatment for HH patients in the city of Guayaquil. 

In this year 2024 we are finalizing discussions to have a reference diagnostic center to benefit in costs and response times to patients who use it. There is still a lot of work to be done, especially with the modifications of the laws in favor of rare diseases, which is an important step to achieve access to medicine treatments at no cost granted by the government.


Hello, I am Sandra Nieto, I am from Mexico and I represent the Mexican Association of Hereditary Angioedema, an association that was born in 2009. So, this year we are celebrating 15 years of struggle. Initially we were 25 patients, now we are 350. However, we still have a long way to go.


Hello everyone, I am Maria Jose, I greet you from Paraguay, I am the representative of hereditary angioedema in my country. I want to tell you that we are 18 members and we send you a big hug from here in Paraguay.


Hello, my name is Karla, I am from Peru. The patient association here was constituted in 2019. We started with ten patients registered with Hereditary Angioedema and currently in the Association we have 65 patients registered with DH diagnosis.


Hello, my name is Natalia and I am from Uruguay. We started our group of patients in 2018 in our organization we have 20 members.


Hello, my name is Wilfredo Bocaranda and I am from Venezuela. We started our group of patients in 2014 and our organization currently has 66 patients diagnosed in our database.


Hello I greet you from Cuba, my name is Rosa Maria Perez Gonzalez and I am a patient diagnosed with hereditary angioedema. In my country there is a general registry of patients with primary immunodeficiency diseases within which we are diagnosed 42 patients with hereditary angioedema of different types, distributed in nine of the 14 provinces of the country. We are recently organizing ourselves and therefore it is our greatest desire to receive experience from nearby countries and the rest of the world in order to create a visible community for physicians, researchers, the pharmaceutical industry and society in general.

El Salvador

Hello, my name is Raquel Fuentes and I am from El Salvador. We started our patient group in 2018 and in our organization we have seven members.

United States of America

Hello, my name is Michelle Cuevas from The United States We started our member organization in which means that this year. We celebrate our twenty five year anniversary. Our organization as over 8,000 members.


My name is Samantha Alvarado Ramirez. I am from Guatemala. Our Hereditary Angioedema group started in 2018. Currently we have eight members which are five from one family, two from one and one individual.


Bonjour! My name is Michelle Cooper, president of HAE Canada. Our organization works with patients, families, healthcare providers and partners to create a better life for patients who currently living with HAE. We have 583 members across Canada.

Dominican Republic

Hello, my name is Karol Bautista and I am from the Dominican Republic. I am a hereditary angioedema patient. So far, we are a group of 14 patients, but we also have the support of our family and friends.


Hello very good morning. My name is Mohammad Rawat, I am the President of the Panamanian Association of Patients with Hereditary Angioedema and I represent this beautiful country, Panama. We started this group in 2014 and then we were able to formalize the legal status of our Association in 2019. Currently, in our association we have 31 diagnosed patients and we are proud that we are the host country of the Regional Conference. Thank you very much.

Costa Rica

Hello, my name is Esteban Ugalde Moya, I am from Costa Rica. Our hereditary angioedema group was founded in 2016 and we are approximately 70 patients eh confirmed.

Puerto Rico

Hello, my name is Zoraida Alvarez Diaz, Greetings from the beautiful island of Puerto Rico.

Our group of patients started in 2016. Currently, we have approximately about 70 members in our organization.

Fernanda de Oliveira Martins, South America and Mexico

“I represent 11 countries in the Americas, where 440 million people live. It is estimated that 14,700 people with HAE live in these countries. We have the opportunity and perhaps the responsibility to help, but this is not an easy task. People with HAE in South America and Mexico face many difficulties, including delays in diagnosis and difficulties in accessing treatment.”

“I support the incredible job my region’s patient associations do to ultimately secure a better quality of life for those living with HAE in their countries.”

“There are lots of activities, meetings, and patient follow-ups. We meet with doctors, contact pharmacists, and liaise with government bodies. The results are showing. More patients are diagnosed and registered with associations. More drugs are approved and available to patients, and we move towards a better quality of life for those with HAE.”

“I’m very proud to be part of this event. May the 2024 HAEi Regional Conference Americas help us renew our purpose and inspire us to return home with a clear plan to Take Action.”

Javier Santana, Central America and Caribbean

“I represent 7 countries in my region. The combined population of my region is about 59.2 million people, and we estimate that there will be 1970 patients in the region. Right now, we are not even half that number. Challenges we face include governments sometimes not accepting the disease, and doctors not knowing about the disease, and patients not following up on medical appointments as they are frustrated there are no treatments.”

“Many years ago in Costa Rica, there were no treatments; the government did not want them, and the doctors didn’t know about the disease. But thanks to the efforts of patients and doctors who did care about HAE, they got meetings with the Government. Today, Costa Rica already has two treatments to treat HAE.”

“There is work to be done. Nothing is easy in life. Difficult things that are worked well always have a purpose and always succeed. You can count on us in HAEi to carry out the necessary work. You can count on us as RPAs. That is our job, to help you.”

Tony Castaldo, North America

“In North America, comprising the United States and Canada, there are approximately 375 million people and approximately 12,500 HAE patients. The United States and Canada both have experienced, well-organized, and very effective organizations. Both organizations have led the fight, and I mean fight, and have been successful in winning access to and reimbursement for modern HAE medications.”

“Securing access to all new medicines and keeping access is now the challenge. We’re putting on the gloves, and we’re ready to fight. We will fight fiercely for continued access for our community.”

“Each organization here in the Americas can rely on the experience and reach of HAEi to help formulate and implement an action plan so you can expedite the process of accessing HAE medicines.”

“We must then work to protect our access to medicines. Ultimately, it is about disease education and advocacy.”

Ending the first evening of the 2024 HAEi Regional Conference Americas, Member Organizations from across the region, shared video messages for patients and caregivers.

2024 HAEi Regional Conference Americas messages for patients and caregivers from Member Organizations from across the region. 

Alejandra Menendez, Argentina

Hello everyone. This is a special request for the group from Argentina . Actually, two requests. 

The first is to be super grateful for the possibility of being part of this wonderful meeting, to be aware of the privilege and at the same time the responsibility that implies representing our organization this meeting. You have the possibility of being surrounded by an incredible group of people from different parts of the world but who have gone through the same experiences that we have, so take advantage and share, share experiences, nourish yourself with all that information. It will surely be a unique and magical experience. 

My second request refers to your personal care and treatments. I would like to ask you 

that from now, each of you to take an active role in the management of your disease. Given the fact that in our country there are now different treatment options, do not miss the opportunity to talk, learn discuss and inform yourself so that together with your doctor you can find the best possible treatment option for each of you. Now, ENJOY!

Jhosett Hinojosa Espinosa, Bolivia

Hello, I’m Jhosett Hinojosa Espinosa, I’m from Bolivia. Well, in our country the group of patients has just been formed, last year, because some people have asked the association for help, so we are still emerging, we still have to attract many people. The diagnosis is not common, it is infrequent, rare, and well, there are very bad diagnoses because this disease is confused, it is difficult to identify and sometimes the means do not exist. So, I have great hope that this group grows, that this disease becomes visible, and that people can have access to treatment and quality of life.

Going through a diagnosis of a less common, rare disease that lacks information in your country generates a lot of uncertainty, you think that you are alone in all this and on an emotional level the impact of this diagnosis is terrible. 

So if you are from Bolivia and you are going through a diagnosis of angioedema, or you think you have angioedema and you have found the association, do not hesitate to contact me so you can be accompanied in this transition and you can, if not resolve all your doubts, have a community that accompany you, we have already been through it, having a timely diagnosis and having treatment is also very important. 

So if we can accompany and support each other, we will be here, and if you already have a diagnosis, also contact us so we can create a community so that we can help other people so that the transition of diagnosis is not so overwhelming and the psychological impact of the illness does not deteriorate us. Well, greetings.

Renata Martins Marchese, Brazil

One of Abranghe’s objectives is to disseminate information about HAE, so we want you to get involved and seek knowledge. Be engaged, seek the correct diagnosis, and the best treatment. Talk to your relatives and converse with your doctor. We are here to help and support you in whatever you need. Remember, you are not alone.

José Ignacio, Chile

Hello, my name is José Ignacio, I am from Chile, our corporation began in 2022, and currently we have 200 patients registered in our corporation.

Since the incorporation in Chile began in 2022, it has been a difficult process, but it is not impossible, and this is why we want to thank each of the patients and caregivers for giving us their support and trusting us. We want to tell you that as a corporation we maintain our mission, which is to fight for quality medicines and a better quality of life for all our patients. We will continue fighting for the people who are here and for those who have already left. Thank you very much to all of you.

Edison Galarraga, Ecuador 

For the group of HAE patients in Ecuador, what I can tell is that we are no longer alone. We still do not have the means to guarantee the improvement of quality of life, we are already a group of 66 people visible to the indifference of our system of health.

Together we must work so that once we have our diagnosis according to the protocols of the Ministry of Health we approach each public care center so that this diagnosis is recognized. With this action of visualizing ourselves, the next step is to demand timely medical attention and medicines at no cost. It is not an easy task and it will take time to do it but with determination we can achieve it.

Karen Sánchez, Colombia

Good morning, how are you? My name is Karen Sánchez, I am from Colombia, the association in our country began in 2020. And at this moment, we are approximately 50 people who are part of the association.

It is important that we know that we are not alone, that we can really have support from advisory associations, understand a little about how the health system works in each of our countries and see how we can ensure that we all have access to medicines. And our families, if there is someone who is suddenly undiagnosed, let them be diagnosed in a timely manner. It is very important that we take advantage of everything we have precisely so that we have all the benefits and we can all have a better quality of life, which in the end is what we all want.

María José, Paraguay

Today the association focuses on attracting the largest number of patients possible and in this way gaining greater strength

Natalia Vidal, Uruguay

I would like all health centers to know about our disease and that we also have access to meditation, at this time we do not have it.

Sandra Nieto, Mexico

The Mexican Association of Hereditary Angioedema celebrates this year 15 years of struggle, 15 years to ensure that you have a better quality of life. 

I invite you to join this fight that is not over yet. Time ago we only had fresh frozen plasma and danazol to be able to treat those of us who suffer from Hereditary Angioedema. We currently have specific medications for Hereditary Angioedema. We have two medications to treat acute crises, two medications for long-term prophylaxis, in addition to tranexamic acid that has also been added to the list and other medications that are about to introduce in Mexico this year. Most hospitals in the health sector already have medication for Hereditary Angioedema, this was something unthinkable five years ago and currently I can tell you that if you go to a health institution, they have at least one medication to treat Hereditary Angioedema and each Medicines are increasingly being added to the different health systems. That has been a very important achievement where you can receive the medication for free. 

I also want to tell you that we already know the prevalence of Hereditary Angioedema in Mexico, it is 0.8 per 50 thousand inhabitants , so we hope that it indicates around 2120 patients in Mexico and that is why I tell you that we still have a long way to go where only the 16.5% have been diagnosed. 

I also want to tell you that November 23rd 2023, ‘May 16th’ was designated as National Hereditary Angioedema Day. I invite you to celebrate together

Carla Goachet, Peru 

Currently in Peru we do not have specific HAE medications. Our main objective in the patient association is that all patients diagnosed with hereditary angioedema have access to these medications. To achieve this, we know that it is vitally important to increase the national rate of patients diagnosed with hereditary angioedema. That is why we have been working hard at national level, participating in different health campaigns, spreading HAE, locating and diagnosing new patients.

Wilfredo Bocaranda, Venezuela

Our message to our foundation and the participants, the patients, and the doctors, is that now in this deep crisis that our country has, let us unite more, be attentive to each other, lend a hand, advise those people who treat with patients and can know what to do in a moment of attack.

There are orthodox treatments in our country, but if there is a way to control an attack, after this we also encourage all the authorities in our country to understand our condition and that it is time for them to stop ignoring it and start to provide us with medicines.

Rosa Maria, Cuba

As an incipient society of patients, we in Cuba, united with our family members who become caregivers and the doctors who fight every day to improve our quality of life, must today face several challenges. Firstly, to make ourselves visible and therefore contribute to ensuring that they know and know how to treat the symptoms of the disease. Secondly, unite among ourselves and join the international community to together learn the management of hereditary angioedema. And thirdly, and of great importance for us as an underdeveloped country, to seek the help of international society through regional organizations to achieve access to advanced technologies, diagnostic means, clinical reagents and, above all, to the medications necessary to control seizures, specifically the c1 inhibitor. For this reason, we want to transmit a message requesting support to improve commercial and financing conditions that allow us to acquire quantities of doses that correspond to the number of patients diagnosed and the frequencies of the most serious crises.

Raquel Fuentes, El Salvador

My message to patients and members of the organization is not to be discouraged and to never give up. Although many times the situation may seem complicated, if we unite we can ensure that people in El Salvador know about Hereditary Angioedema and also, in the same way, we can help future patients to obtain an early diagnosis of angioedema. hereditary and can obtain medications that help us improve our quality of life.

Michelle Cuevas, USA

In the United States, we are fortunate to have FDA-approved therapies. However, access and reimbursement for these medications remains a challenge. We encourage everyone to participate in our effort to ensure that policymakers understand the importance of having uninterrupted access to these life-saving drugs.

Michelle Cooper, Canada 

We need your voice and your involvement to successfully advocate for access to new and current treatments for all HAE patients. Here are some ways you can help: 

  • Make sure you and your family members complete the national survey. Decision makers are interested in our stories and in having data on the needs and impact of HAE on the lives of patients and their families. It was the data from our previous national survey that was a key success factor in getting so many new drugs approved in Canada.
  • Consider participating in a clinical trial. It is very difficult to get a new drug approved if there is no Canadian data for clinical trials.
  • Go to our website to see what trials are currently active.
  • And finally, join us in our awareness and education activities. Participating early in HAE Day, our patient updates, and at conferences like this one, help us raise awareness, create a sense of community and make this a better place for everyone.

Samantha Alvarado, Guatemala

Doctors and patients should be well informed about this great disease so that when we have an episode we know how to act. Currently in Guatemala we do not have the resources or medicines.

Dominican Republic, Caroll Batista

As a patient, I always recommend to others to go to their medical check-ups, to undergo their diagnostic tests, even though in our country up to now we do not have any medication for our condition. Our goal at the moment is to find more patients since we believe that in unity lies strength. In our group we always motivate ourselves, not to discourage them, not to get depressed, to believe positively, to think positively and to believe that in the future we will achieve that our country can approve medications which improve our quality of life.

Panama, Muhammad Rawat

I dream of the day that all patients with Hereditary Angioedema will have their medications for crises and that there will be awareness at all levels, at the medical and nursing level, of the seriousness of this disease. We also dream that one day we have woken up and the reality of patients with Hereditary Angioedema has changed.

Esteban Ugal de Moya, Costa Rica

Well, a super short message. I would like the patients and members of our country here in Costa Rica to undergo medical tests to be able to choose the appropriate medication when they have attacks.

I would also like you to get a little more involved with the work that has been constantly being done to defend what the medicine is and to make it available in the main hospitals of our country and then it can be transferred to other hospitals outside of the capital. .

I also insist and encourage the patients to take the lab tests and to be with us to support what the group is. The Hereditary Angioedema group. To continue fighting with regard to medicine.

And if you have any questions, you can consult on the website (HAEi), you can consult on our Facebook page (AEH Costa Rica), on WhatsApp where we have a Hereditary Angioedema group, so that you are motivated and can be with us. And you will also have the correct information . I want to thank the doctors who have always been with us. Thank you very much and PURA VIDA!

Soraya Alvarez, Puerto Rico

Having access to the health services that hereditary angioedema patients need is of vital importance.

In Puerto Rico we have already managed to establish a highly active community of patients and families and we are achieving great things.

But right now we are at a crucial stage because it is necessary for government departments to establish public policies that allow us to have access to the treatments that our condition requires and that make it possible for insurers not to exclude these medications from their coverage.

So, your participation is important. I invite you to join this effort, because together we can achieve more.

This article is part of an extensive feature on the 2024 HAEi Regional Conference Americas, published in Global Perspectives #1 2024

Raising HAE Awareness in the Americas

Javier and Fernanda, two of the RPAs for the Americas region, opened the second day. Together, they told the assembled patients and caregivers about the importance of raising awareness of HAE and shared some effective ways to do so.

Why is raising awareness important?

It increases enthusiasm and support, stimulates action, and generates local knowledge and resources. It can show government policymakers the will for change. It can improve the lives of people within the community.

Where do you start with raising awareness?

The first way described was social media. Although it may seem obvious, it is only powerful when used properly. Javier and Fernanda told the audience, ‘Don’t use it to impress people; use it to impact people.’ Use social media to show who you are and what you stand for. Use it to tell compelling stories, ensuring they are spread far and wide.

The next step is to talk to as many people as possible. Anyone can be an ally in the fight for better care. Share factual information from others, from HAE organizations. Be honest about your life with authentic conversations.

Take the opportunity to make connections with others, especially patients and caregivers in your country and beyond. This can lead to knowledge exchange and greater awareness opportunities. Change happens one person, one moment at a time.

Contact officials such as government officials, meet with your members of Parliament or talk to people at health ministries. Javier and Fernanda shared a key lesson; know what matters to politicians and tailor your message to match their interests. Research interviews and speeches they’ve given. Keep them up to date whenever you have developments or new materials.

Use HAEi’s free website hosting and templates to give your organization a strong online presence. These have been used effectively in the region. Javier and Fernanda shared examples from Canada, Panama and Brazil.

Use and share the HAE Emergency Cards. Use the Emergency Department Posters as an opportunity to raise awareness. These can create life-saving knowledge and awareness when people need it most.

Of course, Javier and Fernanda remarked that attending HAE meetings such as this one in Panama can be powerful in raising awareness, especially as a chance to network with others and share ideas.

Celebrate success; no matter how small, sharing progress keeps your campaign top of mind and demonstrates your impact. And don’t forget to share photos and information on social media to inspire even more people.

Use the media to help you to get your message out there. The two RPAs explained they knew it could be uncomfortable to talk in front of people or a camera, but the benefits could be huge in making the case for change. Telling your story to a newspaper or magazine can reach so many people. Doing radio interviews keeps you away from the camera, and reaches another audience group. HAEi Advocacy Academy has free tools and advice on telling your story to the media, and the RPAs are always on hand to support you. HAEi offers support with the facts and information crucial to getting media interest.

The Youngsters’ Community and HAEi LEAP program offers opportunities to reach critical younger audiences and build the advocates of tomorrow. One youngster from Brazil said, ‘This community makes us feel like we belong to a group that accepts us, loves us, and helps us just the way we are.’ Our young people are also a skilled resource; their ability with social media can be very helpful. Their unique perspective can be very appealing to media and politicians.

hae day :-), 16 May, is a huge opportunity, as an established annual global awareness day. Share your story. Organize a local event. Get involved, however you want. The HAEi provides everything you need at

Javier and Fernanda concluded by reminding all the delegates of their RPA role. There are 11 RPAs active for HAEi across the world. They have experience. They have courage. They have endurance. They can help you make connections, raise awareness, and make a difference.

This article is part of an extensive feature on the 2024 HAEi Regional Conference Americas, published in Global Perspectives #1 2024

Representatives from our Americas MOs shared how they use some of the tools and services offered by HAEi and the impact they have on their own advocacy. RPAs Javier and Fernanda facilitated the session, performing double duty as translators as each MO representative spoke in their native language.

Lucas Benicio da Silva from Brazil explained how he uses the Emergency Card: “Thanks to the Emergency Card I presented in hospital environments, I could be quickly assessed and given the best possible care. The back of the card provides guidelines for emergency treatment, making it much easier when I’m seen by professionals who take care of my case in hospital networks. Thanks to the HAE Emergency Card. I can say it has saved my life several times.”

Raquel Fuentes from El Salvador explained the impact of the Emergency Department Poster in her country, “When a patient in El Salvador visits most medical centers, the doctor does not know about the disease. We’ve placed the flyers outside of the allergy and immunology area. This helps with patients who might currently be misdiagnosed. I feel like we create more awareness. It means that the next time, the doctors will know what is and isn’t going to work.”

Carla María Goachet Boulanger from Peru and Michelle Coronado from Panama shared their experience of the social media resources provided by HAEi.

Carla said, “We share the resources HAEi provided as images and short reels on Facebook and Instagram. This means we do not need to invest money in creating these things. We can just re-post information or use free tools like Canva to add music or make short videos.” Michelle added, “These have helped us a lot in finding patients. They see the posts and tell you that I have this. It means you do not feel alone.”

Using HAEi Hosted Websites means you can be online quickly and easily. Caroll Batista from the Dominican Republic said, “ They helped provide me with an email, and I was able to create the webpage. The support, continuity, and follow-up they gave me have helped me a lot, as obviously, I am not a professional in the area. I recommend it to other countries. It really helps us to find more patients and raise awareness.”

Michelle Cooper from Canada recommended HAEi Advocacy Academy as a source of education and learning: “I’ve been finding out some of the things that I didn’t know. There are so many programs on there. It’s been great for raising my level of understanding of advocacy. We’ve invited all of our advocacy committee members to do it, and we really encourage our board members to do it because advocacy is such a big part of what we’re doing now.”

Turning to Michelle Cuevas from the USA, the hosts asked about her experience with HAE TrackR. Michelle explained, “In the US, we have to go through an insurance reauthorization process, and many insurers are now asking patients to provide information about their attacks. HAE TrackR allows you to record your attacks. You can set reminders about when your next treatment is due. It’s very safe and secure, and you don’t have to worry about companies getting your information.”

Sandra Nieto from Mexico explained how she used data secured through HAEi’s Research Methodologies to secure positive action on HAE from the Government and physicians, “The survey yielded very important data. We presented it at the Latin American Congress of Immunodeficiencies held in Mexico City. We showed that Mexican HAE patients were not going to the emergency room for fear of being given ineffective medicine. This created alarms among the medical society; they understood they were failing because of their ignorance of the disease. It created awareness among medical personnel across Latin America.

In our presentation to the Government, we could show that patients without treatment lost 20 days being sick in a period of 4 weeks. We are talking about an economically active population, and obviously, it is not in the government’s interest for people to be sick without working because this creates higher expenses.

We convinced the Government to issue a decree that in Mexico, every year hae day :-) will be celebrated. Furthermore, all the patients who have HAE in Mexico are vulnerable people who have rights that must be respected. This will give rise to more initiatives within the Chamber of Deputies to achieve laws that can improve our quality of life and allow us to access all treatments free of charge.”

Several MOs then spoke about the various activities they organize for hae day :-). Michelle from Canada told everyone, “We encourage all of our members to participate in the HAE activity challenge and to post activities on the website. For many years, we were number one. This year, we’re putting a challenge out to our members again. We really want to get closer to the top of the list again!

Last year we had politicians stand up in Parliament and announce hae day :-), which was perfect. For Rare Disease Day, some local monuments and bridges have been lit up. This year for hae day :-) we want to light everything up purple.

Carla from Peru uses hae day :-) to organize lots of different types of activities: “This year, in health, we are planning to give a talk—hopefully with educational credits—on Angioedema at the Medical College of Peru with Dr. Calderón; for children, we are planning to tell many stories about families with HAE, which we can take into schools; and in sports, we are organizing a soccer championship—there will be a Peruvian Cup for the winner.”

Finally, the hosts turned to Michelle from Panama to ask about hae day :-) in her country, “In the past, letters were sent to public institutions, hospitals, clubs, and some private banks to light up their monuments and buildings, with the purple and light blue that defines HAE. We tell them that the disease can be fatal and that medicine is not available. Almost all the institutions have supported us.

We have also shared flyers in different hospitals and offer talks about angioedema. Dr. Olga shares information in her hospital and presents photos of HAE episodes.”

This article is part of an extensive feature on the 2024 HAEi Regional Conference Americas, published in Global Perspectives #1 2024

HAE in the Americas – MO Panel Discussion

Javier and Fernanda brought representatives of all the Member Organizations to the stage for the Americas MO panel discussion. For many representatives, this was their first time speaking at a conference, and we truly appreciate everyone’s contributions. Here we report a summary of the questions and responses.

The first question was, how is HAE diagnosed in your country? Each country responded, and the disparity in getting an accurate diagnosis was clear. Some countries have doctors who know about HAE. Some countries have access to testing; blood tests and genetic testing. Some countries have both. Many countries have none.

Panel members were then asked, why did you become an advocate?

Nicolas Velasquez from Colombia answered: “I have a personal and professional commitment to the cause. I have lived in Colombia. I have lived in the United States. No country is perfect. But I am privileged, and I have a voice. As a father, I know that there may be one person in this country somewhere who doesn’t have the same access that I had, and that is why I became an advocate.“

Edison Galarraga from Ecuador said: “There are many drivers for many people, but my driver was my family. My son was diagnosed, and so I understand that it’s a fight. It’s a fight against the government, against institutions to be able to have access to the quality health care that is needed. You need to keep at it. The end result is what’s important, and that’s what moves me.”

The panel then discussed advocacy and the patient voice, why it is important, and what your future plans as an advocate are. The key message on the importance of advocacy is raising awareness of HAE to get access to medicines. This is the common fight: to be able to live a better life.

Plans for the future include collecting and using data to support activity, pushing for the approval and reimbursement of medicines, maintaining access to those medicines once they are available, expanding the reach of our community, and getting more people involved in clinical trials.

“Data is important to identify who we are, and how many we are. We need to identify ourselves to show people that we are important. If you don’t have data, we do not exist,”  was a comment from Renata Martins, Brazil, and Carla Boulanger from Peru said: “I’m a patient. It’s very important to raise your voice, in your country. Because if the patients themselves don’t speak up, then the education is not going to have an impact.”

In a quick-fire final question, the panel members were asked for a one word answer to what is the number one priority for your country?

This article is part of an extensive feature on the 2024 HAEi Regional Conference Americas, published in Global Perspectives #1 2024

Patient Voices – In Our Own Words

The audience then heard from three courageous women intent on telling their personal stories to inspire and educate their peers. All three gave powerful speeches that resonated with all in the audience, who showed their appreciation with prolonged applause for every speaker.

Taira Corrales Gonzalez , Costa Rica

I am 16 years old, and I am from Costa Rica.

Today, I want to tell my story and how I have managed, along with my family, to cope with this disease.

The first person to be diagnosed in my family was my grandfather. His name was Gerardo Gonzalez Medina. He was diagnosed at the age of 60 and passed away from angioedema four years ago. Years ago, in Costa Rica, the knowledge of HAE was scarce. For this reason, I can say that my grandfather’s death occurred because the doctors did not have the correct knowledge to treat him. Today, approximately 70 patients around Costa Rica have this disease. Costa Rica is still working on a law to protect us as patients of a rare disease.

My C1 and C4 tests were performed in a private medical center since the Costa Rican Social Security Fund did not perform such tests. I was the first person to receive a genetic test at the Children’s Hospital. Patients with HAE only had danazol or fresh frozen plasma, which caused me a skin allergy. Costa Rica has evolved in treatment, and although there are areas for improvement, today, we have two drugs for HAE. Last Friday, I received -with much love and happiness- the first dose of icatibant to administer at home.

It is worth mentioning that the registration of the medicines took about seven years of constant effort. In the case of Costa Rica, a lawyer donated his time and his ability to write letters with his signature. It was impossible to work with the government without it. Achieving the medicine registration would not have been possible without his help.

I was diagnosed by Dr. Mario Martinez, a specialist in Allergology at Hospital Mexico. He was the one who diagnosed my whole family. My family has been misdiagnosed multiple times. My uncle and my mother had surgery, as the doctors thought it was appendicitis.

Seeing that Costa Rica has improved over time fills my soul with strength and peace. I remember I spent most Christmases in the hospital. It reminds me of the little arguments my mom had with the doctors because they did not understand what it meant to have HAE. As a family, we have been able to deal with the different situations that arise from having this disease.

My family lives in constant fear that my grandfather’s story will repeat itself. This year, I decided to take action and get more involved in Costa Rica. I took charge of the HAE patient group. It is impressive to see how much impact the patient community has.

I hope that Costa Rica can organize itself further in the future. I hope not to have to go to the hospital so often. I hope to be able to spend Christmas as a family. I hope that my family can be more united to understand what it means to suffer from HAE. I hope that awareness of this disease will spread and more people around the world will know about it. Finally, I hope my story has touched your heart.

Anne Warren, Canada

I’m 39 years old, and I’m from Canada. I have HAE type 1. I was diagnosed at the age of 12, but started suffering with attacks at the age of 3 to 4 years old.

At the age of three years old, I remember being sick and telling my mother, why am I here? I knew that my siblings and I experienced sickness differently. I knew I was the odd one out. Now, I’d go back to my 3-year-old self and say knowledge is power, and to educate myself.

When I was younger, there were no treatments. There were no outreach groups. There was nothing for me to relate to and nobody to speak about my disease. So, I fought for years to try to have a diagnosis.

Having the advocacy group HAE Canada helped me enormously. It was one of the leading factors of my advocating for HAE in my community.

When I was younger, attacks were mostly in my face. When I became a teenager, they went to my abdomen, feet, and hands.

A year ago, I saw a fatal accident while working as a coach driver. I had to be the first responder, and it ended up causing throat swells when previously I had none. I know that mental health and stress play a big role in HAE. You have to know yourself. You have to make sure that your mental health is good.

My grandfather passed away with HAE when he was 42 years old. When I was diagnosed at 12, I was told that I wouldn’t live a day past my 40s. I’m about to be 40 this year, and I cannot wait to go see the doctor and tell him that he was wrong.

Looking back on my treatments, they would often treat me with antihistamines, anti-inflammatories, and steroids. All did nothing. When I was in my 20s, I finally had the treatments that I needed, and now, in my 30s, I get the preventative treatments, which are a lot better.

Traveling was a no-go for me before. I was not able to go more than 100 kilometers away from my home. Now, I’m able to travel worldwide. It’s amazing to be here. Even at the airport in Colombia, I was going to be denied boarding because I was starting to have a throat swell. I had to inform the stewardess that I had my treatments; I was able to administer them, and I would be okay. I got upgraded to first-class because they were trying to say that I was not fit to travel, but I proved them wrong. I was able to travel.

One of the things that HAE Canada helped me with is to act. Social media helped me too. I know that one of my triggers is emotional. If I’m stressed it will definitely cause triggers. I was told that rashes or bruising weren’t a part or a symptom of HAE. I have realized that every time I get a bruise, within a day, I will have a swell. Now, I infuse right away.

It makes me very happy to know that more people are listening to my journey. It will help other patients to get better treatment, so don’t give up. I encourage everyone to participate in research. I’ve participated in many clinical trials.

I used to go through attacks on an almost daily basis. Now I’m getting them once or twice a week.

I keep fighting. I fight for my medication. I fight my disease. It will always live inside me. Even with a disease, you can move on and go forward.

Claudia Rafael, Peru

Eight years ago, one night I was about to go to sleep. It was late, and I received a WhatsApp message.

It was my sister Vanessa. She said to me: ‘Claudia, you have this?’ She sent me a link, which I followed. It had a lot of information about HAE. I immediately saw myself in all the information. After a bit, I realized that I had a rare disease that had no medication in my country and no cure. I fell asleep, crying then not crying, and thinking about my daughter, who was only 4 years old.

The next morning, I had two choices. My first option was to continue in denial and ask: Why is this happening to me? The second option I had was to accept what had come into my life and that it was going to stay. I returned to the information I had on the web and contacted Dr. Oscar Calderon. He graciously helped me, not only with the diagnosis. Dr. Calderon introduced me to a small group of patients. I think we were 5 or 6 patients at that time.

After getting around some barriers, we formalized and founded HAE Peru. We knew what we wanted. We wanted to work for a better quality of life for patients, which was so lacking in Peru. And so we did. In some cases, formalizing an organization tends to be long and complex. We did it in record time. When we drew up the first work plan, it lasted six months. The second work plan was for one year. It was really comforting, not only for me but also for my colleagues, seeing how little by little we were carrying out each of the projects we had proposed.

The following year, in 2018, a medicine was registered in Peru. I asked my insurance company for coverage of this medicine. You know what happened. I was denied. But the insurance company did not count on something. I was going to review my policy. I did, and I found a little paragraph whose interpretation favored me. Also, the insurance company didn’t count on the fact that Dr. Calderon had instructed me on the entire medical report that he had prepared for the insurance company, explaining and substantiating why I needed the medication in a vital way.

I left that meeting with a lot of sunshine—happy. I was sure that the answer I would get would be positive—and I got the positive answer! I believe I am the first patient in Peru to receive a drug covered by insurance in an amount higher than 80%.

I shared this process of having the medicine provided through private insurance with all the patients of the Association. Many obtained the medicine, others, unfortunately, did not have the same success.

It is here that all of us in HAE do not stop when we do not get the medicine. This is the moment when we have to persevere the most. We have learned that we have the right to health, and we have to be informed to be able to complain.

We have been working on the project of a story, told by adults for children. We are working with teachers and book editors on this, but the pandemic made funding difficult. We raised money to print 100 books and worked for 3 months to make it a reality. By the end of 2021, we got funding to make a video version and have the money for 500 books. It is now on sale, and all the proceeds will help us help even more people with HAE. The story also means we can take HAE into schools and build a truly inclusive society.

HAE Peru awakened my 17-year-old self, a law student, who today, at 44 years of age, can do a little more. We continue to work together in HAE Peru, in collaboration with Dr. Calderón and Milagros Cordoba. I am grateful for the opportunity, and I know that if there is something useful for any association, they will take it.