First in-person patients association meeting of HAEIPA at Hyderabad, India

Hi, I want to send a write-up from India about patient association activities.

After getting the HAE India Patients Association registered a few months back, we organized our first in-person regional Patient meeting in Hyderabad for patients living in the southern part of the country.

Despite the fact that it was arranged at a very short notice of 2 weeks, it was well attended, and we had about 50 participants (patients and caregivers) sharing their stories and learning from the experts.

The meeting was initiated by Dr. Shaibal Guha, founder & treasurer of HAEIPA, welcoming all the participants.

The schedule of the meeting and the need for having a patient organization were explained to all by Ms. Pravalika, the Hon. President of HAEIPA.

Dr. Spurthy Reddy Chitta, a pediatric rheumatologist of Hyderabad, sportingly took time out to come over and give tips about HAE care in children.

Dr. Anuradha Udumudi, the founder of Genentech, a genetic diagnostic and research company, was kind enough to spare time to talk about genetic diagnosis, genome sequencing, and prenatal diagnosis of HAE.

The meeting was blessed by the good wishes of Ms. Fiona Wardman, the executive vice president of Global advocacy of HAEi. She talked about the various activities being done by HAE International.

Patients were further enthused by the joining of Ms. Fanny Schappler,  the regional patient advocate for South Asia, who explained to them the meaning and importance of advocacy.

The presence of Dr. Ankur Jindal,  professor of pediatric rheumatology at PGI, Chandigarh, and the founder of HAESI, the nodal doctors association dealing with HAE in India, was the icing on the cake. He painstakingly took the patients’ queries and answered them in simple language.

As a whole, pre and post-lunch sessions were very well attended by the patients,  both local and from far off, and excited discussions continued till the evening,  when it was time to conclude.

Dr. Shaibal Guha thanked the participants,  as well as the sponsors (Takeda Pharma),  for a very successful first patient meeting ever since the national association was registered.