When preparing the hae day :-) 2021 campaign, HAEi asked the member organizations what they want to achieve by 2030. Here are the answers region for region:

Asia Pacific and Southeast Asia

Australia
Our next step is gaining access to more treatments for the patients.  

Bangladesh
We want to connect more people, help guide them, create more awareness and education, and facilitate action for proper treatment.

China
Our aim is that all patients have specific drugs available and that there are HAE knowledgeable doctors in each area to improve the diagnosis rate of HAE. Also, we want to improve society’s tolerance for HAE patients and improve their quality of life.

Hong Kong
We want to see the approval of at least four more medications freely accessible to all patients as a special drug recognized by the government. We will continue to raise public awareness of HAE in terms of diagnosis and treatment. 

India
Our next step is to get modern medication and create awareness throughout the country with the help from organizations such as the Organization for Rare Diseases India (ORDI).

Indonesia
Next for us is to find more patients and build the HAE Indonesia capacity to create more awareness of HAE – and for patients to get the right diagnosis and access to modern treatments.

Japan
We have five aims:

  • To build HAE Japan to better provide support to the patient community, 
  • To have correct diagnosing for above 80% of the theoretical patients in Japan, 
  • To ensure that patients have a high quality of life and are not limited by their condition given the current advanced treatment environment,  
  • To receive approval of self-medication for C1-INH, 
  • To ensure treatment options are authorized for patients so that they can choose the treatment that best fits their situation.

New Zealand
We have no access to any funded prophylactic modern therapies, so we want to achieve this so all patients have a much better quality of life soon.

Pakistan
We want to establish our association to provide modern treatments free of cost so all HAE patients would live a better life.

Singapore
Our aim is for all Singaporeans with HAE to get access to modern treatment via a medical fund or financial assistance.

South Korea
As we have only one HAE treatment, we will introduce additional drugs through our activities. Our organization will be activated as an official non-profit corporation. We will increase the diagnosis rate of HAE. We will promote and raise awareness of HAE so that there are no undiagnosed or untreated patients. We will focus on patient training to enhance HAE symptoms and awareness, and we will promote HAE to medical staff to help accurate diagnosis. Our overall aim is to put the safety of HAE patients first and minimize mental stress for the health of the mind and body.

Taiwan
In cooperation with Dr. Shyur, we hope to successfully introduce new drugs to the health insurance so that we can get away from steroids.

Central Eastern Europe and Benelux

Armenia
We want to organize more seminars for patients and their caregivers with the involvement of HAEi, expand the number of members, enter clinical trials with new drugs, register modern drugs in Armenia, and initiate a process to establish an ACARE center.

Czech Republic
We want to make life with HAE as simple as possible for everyone. This could be with the help of a new treatment launched with the support of doctors, education of the specialist community and the raising of HAE awareness. We want to make sure HAE affects our lives as little as possible.

Georgia
We want to be widely involved in clinical trials of HAE, find resources for the diagnosis and treatment of patients, and facilitate the registration and importation of modern medications.

Hungary
We would like to achieve a status where children can self-administer medication. With the availability of modern medicines, we want each HAE patient to have the highest possible independence from the disease. We would also like all potential HAE patients to get an accurate diagnosis within one year after the first symptoms.

Netherlands
We would like to make the disorder known to all general practitioners, and that a definitive solution is found, we mainly think of genetic repairs. These are still in their infancy, but the reports are encouraging. We will continue to argue that HAEi will also represent the acquired angioedema forms.

Poland
By 2030, we would like HAE patients to have unlimited access to all therapeutic options registered in the European Union for on-demand treatment and long-term prophylaxis. We want each diagnosed patient to be able to administer the drug personally, regardless of the method of administration, to feel safe, feel independent and take complete control of HAE. We want all HAE patients in Poland to be diagnosed by 2030.

Russia
Our next steps are to strengthen, multiply and develop our achievements to date. We very much hope for great progress in the treatment of HAE over the next ten years.

Slovakia
A campaign to raise the disease profile is currently underway, and sessions and articles are being prepared to help patients and professionals better understand the life of a person with HAE. We believe that the campaign will facilitate the demanding process of approving and registering effective medicines. Other activities will be aimed at making the lives of people with HAE more pleasant by sharing problems and experiences. We believe that the life of HAE patients in Slovakia will become simpler and better.

Ukraine
We want to find more patients, provide them with a sufficient amount of medicine and achieve the right to self-administration of HAE medicines. We plan to actively develop, share the experience with other countries, and participate in research on new methods of treatment.

Middel East and Sub Sahara Africa

Egypt
We want to ensure that the registration of medication for HAE treatment is completed and all HAE patients can access that medication. Also, we would like to increase the number of doctors familiar with HAE and ensure they know how to diagnose and treat HAE accurately. We will continue the journey of awareness to reach all parts of Egypt and provide full knowledge of the disease and how to diagnose and manage it.

Kenya
We want to ensure that HAE patients can be recognized under disability and receive support as a result. We will work on getting emergency medications for HAE patients and increasing activities for our members and other stakeholders. We want to participate in public forums with key government institutions to ensure that our HAE voices are heard. This is to ensure inclusion in the Universal Health Care government scheme to make life-saving medications affordable for patients.

Lebanon
We want to reopen the file with the Ministry of Health to secure the proper treatment for people with HAE and to grow the number of HAE knowledgeable and motivated physicians. We want to continue raising and increasing awareness of HAE, to help reduce the time that it takes for people to get an accurate diagnosis.

South Africa
We want to achieve an improved response from the medical sector in better understanding HAE and ensuring that modern medication becomes available as a matter of priority.

Syria
Our next step is getting access to modern HAE medications.

Mediterranean, North Africa and British Isles

Algeria
Our main objective is the availability of emergency medicine, something we are actively working on with the health ministry.

France
The next step is to find ways to decrease the prices of modern treatments that are today too expensive to cover the need of all HAE patients.

Italy
We would like to spread self-administration classes and the knowledge of HAE in the country, get fast diagnosis and access to the right medications and have more knowledge about other forms of angioedema.

Libya
Our goals are first and foremost providing the right medication for HAE patients, providing an awareness platform in hospitals, private and public, and creating a specialized care center for HAE patients.

Morocco
Our next step is that people with HAE are introduced to the required drugs, both for crisis treatment and for planned or urgent surgery. 

Portugal
Our aim is to increase the number of members and their interaction with HAE Portugal. We want to get home treatment for the medicaments available in Portugal and increase the number of available medications as well as the number of hospitals with medication for HAE. We would like to see greater dissemination of HAE in society in general and among health care professionals as many still demonstrate weak knowledge about what HAE is and how to act in acute attacks.

Spain
We want people with HAE to have equal access to treatment and have greater consensus among treating physicians regarding the use and home availability of HAE medications all over the country.

United Kingdom
We are working with HAE clinicians to recognize childhood attacks sooner. We hope that children with HAE will no longer have to miss school, and they can go on to college and university and have a life that is not limited by their condition. We have some great inspirational HAE patients who have achieved so much despite having HAE; they help us support our younger patients and encourage them not to let HAE stop them from achieving their dreams.

South Eastern Europe

Bosnia & Herzegovina
Our next step is to continue establishing and registering the association, continuing testing for HAE, and raising awareness in the media. Our vision is to provide free testing and free therapy for all HAE patients in the shortest possible time. By receiving free therapy, we would restore dignity to our patients and improve their quality of life. We will continue to raise awareness amongst everyone about what HAE is, what the symptoms are, what therapy is appropriate and how to manage a patient with HAE. We want to help general practitioners to be able to promptly identify and refer the patient to the right specialist to confirm the diagnosis and for them to receive therapy. The biggest challenge to deliver on our planned activities is only modest financial resources.

Bulgaria
Our next important goal is to improve the access of HAE patients to therapies and, in particular, to HAE prophylaxis. Our goal is to collaborate more closely with the patient community, the authorities and health care professionals to improve access to treatments, especially in terms of prophylaxis with subcutaneous medication or any new oral therapy. We deeply believe that this will significantly improve patient compliance and will lead to positive lifestyle changes.

Croatia
Our aim is that we all have medicine available at home. Also, we want to secure disabled persons and benefited length of service status and faster diagnosis.

Cyprus
Our next steps are to make more medicines available and raise awareness among more people, especially doctors.

Greece
We want to get our organization recognized, make more social media postings to reach more people, and improve our website. We plan to hold meetings with doctors and patients. We strive to get more medicine approved for adults and children with HAE, find all HAE patients in Greece, and create awareness campaigns for medical professionals and the general public.

Montenegro
We would like to get several HAE medications approved for all patients through changes in the legal framework. We would like to work more closely with doctors and medical practitioners to treat HAE patients better and work with doctors on developing protocols for the treatment of HAE patients, especially children. We would like to create a database of HAE patients and increase public awareness of HAE.

North Macedonia
We have these aims towards 2030:

  • Provide prophylactic treatments for patients who need it,
  • Open an ACARE center with Dr. Vesna Grivceva Panovska where patients could come for periodic examinations and consultations,
  • Disperse the distribution of medicines in cities where there are HAE patients, provide better information to primary care physicians in smaller towns on the specifics of HAE and the needs of HAE patients, and improve communication and collaboration between HAE patients and their primary care physicians.

Romania
Given that HAE is still underdiagnosed, our efforts will continue in the direction of raising awareness, both amongst doctors and the population. We will continue to advocate for the adoption of legislation recognizing HAE as a disabling disease so that patients can benefit from all legal rights. Unfortunately, there are also children under the incidence of this disease. That is why one of our goals will be to start psychological counselling programs for them.

Serbia
We want to raise HAE awareness to the level of recognition by most doctors. We would like to find as many undiagnosed patients as possible and provide prophylactic therapy for all those interested. Another mission is to decentralize therapy.

Slovenia
We want to officially establish HAE Slovenia as a formal association that will make it easier to ensure emergency medicine is always available at emergency centers. Awareness and detection of potential HAE patients is also needed to prevent the worst. If we save one life with this, all the effort is rewarded.

Turkey
We want patients to be allowed to administer C1-INH and that home treatment is included within the scope of payment. We want to develop advocacy among our patients and reach more young patients enabling them to take a more active role inside HAE Turkey.

We want to increase advocacy activities in our adult patients to ensure that they take a more active part in HAE Turkey and to work together in all the activities we carry out throughout the country. We are always stronger together.

Nordics, Germany, Austria and Switzerland

Austria
We will try to be more present in the media, in medical journals, etc., to draw attention to HAE. It is important to reach patients who do not know they have HAE, and for this, the clinical picture would have to become better known among doctors. 

Denmark
Our focus is continued access to the wide range of HAE medicines, and that new HAE medicines will also be available to our patients. We want all patients to be offered prophylactic treatment so that no one has to wait for the “catastrophe” but can focus on living a life without fear of HAE attacks. Also, we aim to get ACARE implemented in Denmark and have strong treatment centers for HAE patients.

Finland
We hope to get more information to our members about HAE as we believe there is a lot to be achieved by bringing HAE people together.

Germany
We aim to make HAE even better known so that each affected person receives suitable therapy. We want anyone to be able to use medication at home and that all HAE patients have been found so there are no more unreported cases. Ultimately, our aim is that nobody has to die from HAE anymore.

Norway
There is currently a possible change in the reimbursement policy, which might result in only a few options funded by the health care system. Thus, we want to achieve that all the approved HAE medications are still available to all patients. 

Sweden
We want to achieve that all patients have access to new and preventative treatments. We also want to hold many meetings, allowing us to exchange experiences and learn from each other. We want to increase awareness of HAE Scandinavia so that everyone who receives an HAE diagnosis or has a relative diagnosed with HAE is given the opportunity to join a strong and supportive patient organization.

Switzerland
We hope that by 2030, those affected by HAE will have a diagnosis much faster and that all HAE patients will become members of HAE Switzerland. That way, they can, as quickly as possible, get new information on HAE.

South America

Argentina
We would like to achieve a zero-attack pattern for our patients, as well as access to the greatest number of treatments available, tailored so they would allow our patients to lead an absolutely normal life. By 2030, why not also dream of the possibility of a cure?

Brazil
We want to involve the patients more with our association, register all patients with HAE according to the Brazilian prevalence, better their quality of life with access to oral drugs for crisis control and a possible genetic modification in the defective gene.

Peru
Our aim is that additional treatments enter Peru, including those suitable for children and pregnant women suffering from HAE. We want HAE drugs to be subsidized by the state and that patients get an early diagnosis. We want to achieve an adequate comprehension of treatment for HAE patients in the private and public sectors nationwide and to have HAE specialists in all departments of Peru.

Venezuela
Our aim is that all patients have effective treatment with immediate availability. We would like to hold a world conference on Margarita Island, a place in the Caribbean anchored in our beautiful country. Here people from all over the world could come and share with patients with the same health situation.

Central America, Caribbean, Mexico and North America

Canada
The next steps are to welcome HAEi representatives to Canada to learn how to partner with upcoming projects, such as HAEi Connect. We want to help HAE patients with Normal C1 gain access to the variety of treatments that benefit patients with HAE Type 1 and 2.

Costa Rica
All of our efforts are focused on getting medication through social health and increasing the knowledge about HAE in the medical community. 

Cuba
The next step is to establish our organization legally. Then we will work on medical and social awareness about HAE and win the battle on the importance of guaranteeing access to advanced therapies for each patient.

El Salvador
By 2030, we expect to have more patients diagnosed with HAE and to be able to create a formal association. We want to have access to better treatments and raise awareness about the existence of HAE and the impact of misdiagnosis and ignorance. By having more patients with a registered diagnosis, we expect to hold meetings with doctors and patients at a national level to obtain information about the progress in the country and globally.

Guatemala
The most important aim for us is to have a treatment for HAE patients.

Mexico
We aim to ensure that the majority of patients have access to specific HAE medications, whether they are entitled or not. We would like to have a national reference center for HAE. We want to see an HAE screening conducted at the national level to increase the percentage of people diagnosed with HAE since the disease is currently underdiagnosed.

Panama
We hope that by 2030 all HAE patients have access to various treatments. We also hope that we have detected more patients because surely more people still do not know what they are suffering from.

Puerto Rico
We want people with HAE to have unrestricted access to modern therapies so they can experience life to the fullest and effectively manage their HAE. We want people with HAE to continue benefiting from HAEA’s innovative programs and services. 

USA
By 2030, we want people with HAE to have unrestricted access to available modern HAE therapies so they can experience life to the fullest and effectively manage their HAE. We want people with HAE to continue benefiting from our innovative programs and services. We will expand our outreach, awareness and educational initiatives to narrow the gap between symptoms and proper diagnoses for people with HAE. Ultimately, we will continue to pursue a cure!