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 they had been going through all their lives.
A group of 40 of us gathered at the Aloft Hotel in Aerocity, Delhi where the morning session opened with a welcome and introduction by Dr Shaibal Guha, who is head of HAE India, and myself. Our first two presentations were by Dr Aleena Banerji who presented remotely from the USA on “What every patient needs to know about HAE” and “The History of HAE Treatments and what is on the horizon”. The next speaker was patient Pravlika who shared her story with candidness and hope.
Following a morning tea break, Dr Anuradha Udumudi – the founder of Genetech – discussed Genetics of HAE and presented on her experience with HAE, which was very insightful.
Professor Binay Biswas then spoke about the in-hospital management of HAE patients in India with limited options and unlimited challenges.
After lunch, Dr Ankur Jindal spoke on the Indian perspective of HAE and presented case studies. We then heard from Mr Prasanna Shirol and Ms Shami Ravishankar from the Organisation for Rare Diseases India on their initiatives helping patients create awareness in India. Furthermore, our own Henrik Balle Boysen and Anthony J. Castaldo presented on HAEi experiences around the globe and shared information on resources and the support that HAEi can offer.
The afternoon session was an opportunity for everyone to have their questions answered by the panel of experts; this was then followed by discussions on the next step for HAE India.
All presentations and speakers were warmly received, and from the feedback, the meeting was a very positive and worthwhile experience for everyone. Here is just some of the feedback we have received following the meeting:
- “It was great to meet you all personally. I am very happy that we were able to share our experiences with fellow patients and were able to get detailed replies from all experts. Each and every speaker was excellent and my thnx to all of them. My special thnx to Fiona and HAEi team for the wonderful coordination.”
- “Thanks a lot to everyone. We have to keep our move on and today was indeed a great day for all of us. Please be in touch”
- “Thank you very much Fiona and other team members for all the wonderful arrangements for meeting today. Wish HAE India all the very best to support patients and families.”
- “Informative, interactive, inspirational HAE meet. Thank you very much”
- “Thanks Fiona and other delegates and my fellow friends coming from long way and gathering a HAE meet in India for first time”
- “Many thanks to Fiona and HAEi team for organizing this and for everything else you do to make better treatment options available to HAE community”
- “Our special thanks to Dr Shaibal also for his support and follow up.”
- “Thank you Fiona and Dr Shaibal for giving us an opportunity to come together share and discuss stuff. It was really wonderful meeting you guys. Stay strong and positive. And if you are having any attack or if you need any emotional support we can always count on each other to understand”
- “What I saw at the meeting yesterday was truly inspiring! Commendable job by Fiona, HAEi and HAE India. If any of you need information or advise on inheritance of HAE and genetic testing or counseling for your family or other family members, please write to me. I will be glad to help. I hope
the registry will grow in numbers and most needed drugs will be available to all in India. Good luck to all of you! Dr Anuradha Udumudi from GeneTech.”
Discussions and plans are already in motion to set up a Physician forum and work on ways to educate and create further and necessary awareness in India. We have a long way to go, but the first steps have been taken.
It was great to see new friendships formed, to feel the positivity, and see the willingness to continue to strengthen the unified patient voice by everyone who attended the meeting.