From Priyanka Meduthuri, HAE India

HAEIPΑ Patients Meet 2025 in Charnock Hospital, Kolkata: Two days and so many powerful moments.

On May 17, HAE India’s dedicated state representatives came together at Charnock Hospital, Kolkata, to strengthen our collective mission and drive change for our rare community.

We discussed how to become stronger, more effective advocates, how to influence policies, and how to reach more doctors and undiagnosed patients across the country. We explored how to leverage powerful tools like HAEi Connect, HAE TrackR, and the HAEi Advocacy Academy to equip ourselves to better support patients and families. A key part of our discussion focused on India’s Rare Disease Policy – its current challenges, opportunities for improvement, and how we can ensure better access to life-saving treatments.

Most importantly, we outlined clear goals for our states and created a collaborative to-do list for the future of HAE advocacy in India. Because every patient matters, and every voice counts!

On May 18, 2025, we came together at Charnock Hospital, Kolkata, for the HAE Society of India (HAESI) Patients Meet – a full day of learning, sharing, and uniting as a rare disease community.

We began with a heartfelt welcome note from President Pravalika Meduthuri and Founder Dr Shaibal Guha, sharing how far we’ve come on India’s HAE journey. Fanny Schappler, our HAEi Regional Patient Advocate, reminded us that we are part of a global family fighting for access, awareness, and care.

One of the most powerful moments of the day was a one-hour talk by Dr Ankur Jindal, who gave a deep and incredibly helpful overview of HAE in India – from diagnosis to treatment gaps to emergency care. His insights were eye-opening and empowering for patients and caregivers alike. We also had an expert talk by Dr Binay Biswas, who brought clinical clarity and practical information that helped patients better understand their condition.

The expert panel, featuring Dr Binay Biswas, Dr Suprit, Dr Archan, and Dr Rakesh (all from HAESI), and all the wonderful doctors from Charnock Hospital, offered practical advice and answered patient questions with compassion and clarity.

After a powerful morning of knowledge-sharing, the afternoon brought heart, connection, and action. Patients and families shared their journeys – raw, real, and deeply moving. We admire their courage to open up, and we’re so grateful they traveled from near and far to attend this meet and be part of something bigger.

One of the most meaningful parts of the day was seeing the engaging conversations between patients and doctors filled with questions, insights, and genuine connection. Mr. Manoj Kumar guided us through India’s Rare Disease Policy, helping us understand the road ahead and how we can influence change through advocacy.

We closed with an interactive quiz, shared laughs, and reflections that reminded us – this isn’t just an event. This is the beginning of a stronger, more united HAE community.