This input is dated May 2021 In brief Name for organization: HAE India 70 members at 1 Jan 2021 Name of approved HAE treatments: Tranaxemic acid Danazol Stanozolol Fun/interesting facts Diverse and inclusive. People are more affectionate and helpful towards each other. We can experience all kinds of weather [...]
During the past few months, I have been working with member organizations in my region to nominate physicians for the Regional Medical Advisory Panel (RMAP) project. I am pleased with the confirmation from the nominated doctors who have accepted to be panelists. I look forward to holding the first RMAP meeting in the next [...]
The past few months have been busy in the Asia Pacific region with some exciting projects going on with the member organizations. I always enjoy catching up with each of the patient leads from all the member organizations to discuss plans and how to create awareness and education opportunities and build their capacity. I [...]
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 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 Fiona Wardman I attended and presented at the Third Scientific Congress of APSID during February in Chandigarh, India. While there, I met with patients and the administrative team from HAE India. We had some useful discussions, including ways of getting access to modern treatment by conducting a survey, and how important [...]
From Regional Patient Advocate Fiona Wardman I attended and presented at the Third Scientific Congress of APSID during February in Chandigarh, India. While there, I met with patients and the administrative team from HAE India. We had some useful discussions, including ways of getting access to modern treatment by conducting a survey, and how important [...]
HAE India now has a Facebook page – have a look at https://www.facebook.com/HAEindia. The HAE International map has been updated with eight HAE knowledgeable physicians in India - please have a look at https://haei.org/hae-membercountries/india.
From Chief Regional Patient Advocate Fiona Wardman: Early March 2019 patients, their families, physicians, industry and other rare disease experts along with HAEi came together for the first HAE meeting in India. For most of the patients, this was also the first time they had met anyone outside of their family who knew exactly what [...]
By Fiona Wardman, HAEi Chief Regional Patient Advocate Early March 2019 patients, their families, physicians, industry and other rare disease experts along with HAEi came together for the first HAE meeting in India. For most of the patients, this was also the first time they had met anyone outside of their family who knew [...]
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.
HAE International (HAEi)
10560 Main Street, Ste PS40
Fairfax City, VA 22030
United States of America
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HAE International (HAEi)
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8700 Horsens
Denmark
gro.ieah@ofni
