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At the presentation of the financial report for the nine months and third quarter ended 30 September 2020 Pharming Group N.V. CEO Sijmen de Vries says: “We are pleased to announce continued growth, demonstrating consistent progress, despite the impact of the COVID-19 pandemic. We remain focused on, and are delivering against, our strategy for long-term growth. [...]
From Regional Patient Advocate Javier Santana Like many countries around the world, the Central American and Caribbean region has also been affected by the COVID-19 pandemic. This has allowed many governments to enact lockdown and establish new regulations to avoid contagion. We have not received information on HAE patients in the region who have [...]
From Regional Patient Advocate Maria Ferron The ACARE Center initiative has been presented to all the countries in the region, and it has been well received. We already have ACARE Centers set up in the United Kingdom, France, Spain, and Portugal and I am expecting that more will be settled by the end of [...]
From Regional Patient Advocate Natasa Angjeleska I have had continuous communication with patient organizations, pharma and physicians in the past period. Most frequently the newly established patient organization from Croatia informed me and consulted about their plan for activities in the next couple of months, including children’s gathering and activities for the youngest members [...]
From Regional Patient Advocate Fernanda de Oliveira Martins COVID-19 has hit Latin America very hard. Unfortunately, many lives have been lost, including that of family members of people linked to HAE patient associations. In Mexico, more than 187,000 people lost their lives to COVID-19. In Brazil, the number is more than 120,000. In Peru, [...]
The Asia Pacific region is diverse in terms of how the member organizations are structured. The region has well-established groups and some in their infancy, the others, somewhere in between. Despite the COVID-19 crisis continuing in so many countries, some good work is still being done to continue to create awareness in the region. [...]
From President Alejandra Menendez: Considering the ongoing pandemic situation and the importance of experience sharing on 8 August 2020, HAE Argentina held a patient webinar to present the first reported case of COVID-19 in an HAE patient in our country. The meeting was co-hosted by Dr. Ricardo Zweiner, Dr. Jesica Cepeda and myself as [...]
From Patient Advocate/Social Media Manager Ianice Viel, US HAEA: US HAEA Programs Transition During COVID-19 Pandemic: The COVID-19 pandemic has dramatically altered the way we communicate and connect with one another. At the US HAEA, we understand how vital it is for our HAE community to feel connected despite COVID-19 restrictions. Our commitment to [...]
From Laura Szutowicz, CEO of HAE UK: Normally at this time of year, we are in overdrive planning for the Patient Days which we hold in October and November, with the Scottish one first and then the National one in November. We were very excited about this year as it was going to be [...]
From Director Fiona Wardman, HAE Australasia: HAE Australasia recorded a Q&A video with Prof. Connie Katelaris in June. The questions and answers related to COVID-19, existing and new treatment options, clinical trials, and a new support service was announced for patients in Australia and New Zealand. The video has been uploaded on to our [...]
From President Michal Rutkowski, HAE Poland (the Swelling Beautifully Association): Apart from the global pandemic situation, 2020 itself has been a challenging time for HAE Poland. This year, all three HAE treatments reimbursed in Poland (C1-INH, rec C1-INH, icatibant) lose reimbursement approvals and the goal no. 1 for us was effective activities enabling the [...]
State and city governments, national patient advocacy groups, and local communities across the United States of America came together on 10 July 2020 to recognize Chronic Disease Day and support the chronic and rare disease communities during a time of unprecedented challenges for individuals who are immunocompromised. Chronic diseases are responsible for seven of the top 10 [...]
As HAE friends around the globe will know the annual hae day :-) aims to raise awareness worldwide – and as part of the efforts to raise awareness HAE International organizes the HAE Global Walk. “This was also going to be the case in 2020, and we had high expectations regarding setting another record. [...]
From President Beverley Yamamoto, HAE Japan As in previous years, on 22 February 2020 we hosted the Rare Disease Day event for Kobe City. Many other Rare Disease Day events had been cancelled due to the COVID-19 situation, but as ours is a relatively small event we decided to go ahead with some precautions. [...]
From President Sarah Smith, AEDAF Awareness day: After having to cancel its 22nd General Assembly and Annual Meeting, which was due to take place in April, and with very strict confinement measures in Spain as of mid-March due to Covid-19, AEDAF did decide to carry on with the project it had planned for hae [...]
From Chief Executive Officer, Laura Szutowicz, HAE UK It seems no time at all since I wrote the last News from the UK, in early March 2020. It was full of the “I am Number 17” campaign, our wonderful fundraisers running marathons and 24-hour karting challenges and looking forward to the 2020 HAE Global [...]
From COO Daphne Dumbrille, HAE Canada Organizations across the globe have adjusted and regrouped due to the COVID-19 pandemic, and HAE Canada is no exception. It is hard to believe we are in the third month of the quarantine, but we are grateful we are still able to move forward with our projects and [...]
From CEO Fiona Wardman, HAE Australasia HAE Australasia Youth Group is up and running, and the group facilitator Jess has done a great job in connecting some of our youth from Australia and New Zealand. We would encourage more youth to join the group as we have some projects and a competition for them [...]
From Ianice Viel, Patient Advocate/Social Media Manager, US HAEA COVID-19 webinars and Webinar Briefs: In light of the COVID-19 pandemic, the US HAEA has been offering a series of webinars presenting information on the latest developments on COVID-19. The webinars focus on potential health risks presented by the coronavirus to HAE patients, regulatory and [...]
From Vice President Nicole Hodler, HAE SchweizUnfortunately, also we at the Swiss HAE organization had to cancel our June meeting due to coronavirus COVID-19. We are still evaluating the possibility of proceeding with this meeting in November 2020 instead.In the Sunday newspaper from 16 February 2020, an article was published with the title “Strange Swellings” [...]
At the presentation of the financial results for the fiscal year ended 30 April 2020 CEO Andrew Crockett of KalVista Pharmaceuticals, Inc. says: “We have two oral candidates in clinical trials that have the potential to provide HAE patients with a complete set of options to treat their disease. We are pleased with our progress [...]
From Regional Patient Advocate Javier Santana During the past months, many patients in the Latin American region have been pending all the information related to the global pandemic coronavirus COVID-19. During the month of March, a virtual conference was held in Spanish so that Spanish-speaking patients who wanted to clarify doubts about coronavirus and [...]
From Regional Patient Advocate Fiona Wardman I had planned to hold the first HAEi Regional Workshop Asia Pacific in Singapore in April; however, due to COVID-19, the workshop has been postponed until we are all safe to travel again. I’m happy to report that we have two new patient groups in the Asia Pacific [...]
From Regional Patient Advocate Natasa Angjeleska I have had communication via e-mail with the patient groups and the patient organizations in my region to explain to them the establishing, the aim and the operation of the Regional Advisory Group (RAG) in Southeastern Europe. I requested the nomination of an Advisor from each country and [...]
As HAE friends around the globe will know the annual hae day :-) aims to raise awareness worldwide – and as part of the efforts to raise awareness HAE International organizes the HAE Global Walk. This was also going to be the case in 2020, and we had pretty high expectations regarding setting another record. [...]
Pharming Group N.V. supports hae-day :-) 2020, the global awareness day for HAE. On 16 May every year, the hae day :-) aims to raise awareness of HAE among the general public and medical community in order to ensure better care, earlier and more accurate diagnosis, and knowledge that HAE patients can lead a healthy [...]
2020 HAE VIRTUAL GLOBAL CONFERENCE 2020 HAE Virtual Global Conference now open! While COVID-19 prevented us from meeting in person, the “can-do” spirit of the HAE global community has inspired transforming this widely anticipated bi-annual conference into an exciting virtual event. Welcome to the 2020 HAE [...]
2020 HAE Global Conference The 2020 HAE Global Conference goes VIRTUAL From 14 to 17 May the 2020 HAE Global Conference was planned to take place in Frankfurt, Germany, but due to the COVID-19 situation we had to cancel the conference. While COVID-19 prevents us from [...]
At the presentation of the financial results for the first quarter ended 31 March 2020, Intellia Therapeutics, Inc. President and CEO John Leonard, M.D. says: “Our mission is to develop curative, CRISPR/Cas9-based treatments for severe diseases. I am grateful to our team for remaining steadfast in our commitment to patients and putting us in the position [...]
“This is a transformational year for BioCryst Pharmaceuticals, Inc. as we prepare to launch berotralstat in multiple territories to bring our oral, once-daily prophylactic medicine to HAE patients, and begin generating significant revenue,” says Jon Stonehouse, President and CEO at the announcement of BioCryst's financial results for the first quarter ended 31 March 2020. Program Updates [...]
In its financial results for the first quarter of 2020 BioMarin Pharmaceutical Inc. states: On November 14, 2019, the Company announced its third gene therapy candidate, BMN 331, for the treatment of HAE. BioMarin plans to build on its ever wider and deeper expertise in developing gene therapies for severe hemophilia A and phenylketonuria to improve efficiencies in [...]
By Maria Ferron, Regional Patient Advocate Mediterranean & Maghreb Countries I was very worried that the 2020 HAEi Regional Workshop Maghreb-North Africa was bound for disaster after experiencing many problems and difficulties in the organization. Then at the last minute, I was advised that Dr. Laurence Bouillet and Dr. Teresa Caballero would not be able [...]
From President Adrienne de Jongh, HAE South Africa HAE South Africa have successfully been registered as a non-profit company which will allow us to progress and collect some much-needed funds. We have four directors at present and plan to add a fifth soon so that we can fulfill all the roles we have set out to [...]
From Regional Patient Advocate Maria Ferron I have been involved with meetings and follow up in Spain with pharmaceutical companies regarding access to HAE treatments. The 22nd General Assembly and Annual Meeting of HAE Spain (AEDAF) was set to take place on 18 April 2020 in La Paz Hospital Madrid. However, due to the COVID-19 [...]
From Regional Patient Advocate Natasa Angjeleska Alongside the President and the Vice President of HAE Macedonia and members from the Rare Disease Alliance, I worked on organizing a public event with famous child actors, a singing group, band, and dancers on an event for Rare Disease Day. Unfortunately, the event had to be canceled under [...]
From Regional Patient Advocate Natasa Angjeleska In Croatia, I have been assisting and advising the national patient group, which was officially founded on 29 February. HAE Croatia drew some media attention and appeared on several TV shows to explain HAE. They also held a session on Rare Disease Day, which was attended by physicians and [...]
The first 2020 issue of the HAE International magazine Global Perspectives – your ultimate source of HAE information globally – is now out. This time you will, among many other items, find articles on these topics: Important Information About COVID-19 and HAE FAQ: Cancellation of the 2020 HAE Global Conference News from the HAEi [...]
Today is 1 April 2020 – and that marks the beginning of this year’s HAE Global Walk. Due to coronavirus COVID-19, the population in a large number of countries around the world experience harsh limitations to everyday life. Nevertheless, we hope that many people will find it possible to take part in our 2020 HAE [...]
Dear HAEi Friends, On behalf of the HAEi Board of Directors and the entire HAEi team, I would like to extend our heartfelt wishes for the health and safety of you and your families as you deal with COVID 19 Coronavirus pandemic. HAEi cares deeply about the health and well-being of the wonderful people [...]
The health and well-being of everyone in the HAE community is of paramount importance to us! As communicated before, HAE International has been carefully monitoring the developing situation regarding COVID-19 (novel coronavirus). HAEi leadership has been meeting on a daily basis to carefully assess the evolving situation and has determined that we cannot ensure the health and safety of [...]
HAE Global Conference 2020 CANCELLATION: 2020 HAE Global Conference The health and well-being of everyone in the HAE community is of paramount importance to HAEi! As communicated before, HAE International has been carefully monitoring the developing situation regarding COVID-19 (novel coronavirus). HAEi leadership has been meeting on a daily [...]
HAE GLOBAL CONFERENCES The largest international gathering with a focus on HAE topics Every second year HAEi welcomes HAE patients, caregivers, health care professionals, and industry representatives to the HAE Global Conference – the largest international gathering of its kind solely with a focus on HAE [...]
MAGAZINES Global Perspectives April 2024 Among the topics in this issue of Global Perspectives you will find: News from the HAEi Regional Patient Advocates News from HAEi Countries Around the Globe Hola Americas – Let's Take Action – extensive feature about the 2024 HAEi Regional Conference [...]
Videos On this page you will find a few videos on HAE and HAEi. Further material can be found on the HAEi YouTube channel here. Hereditary Angioedema with Normal C1 Inhibitor. HAEi webinar with Dr. Marc Riedl from the US Angioedema Center in San [...]
HAE International is a global non-profit network of member organizations dedicated to raising awareness of hereditary angioedema and improving the lives of people with HAE.
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