News from India
HAE Patient Advocacy Meeting – Bengaluru – Navigating Your Hereditary Angioedema (HAE) Journey
On 22 February 2026, the HAE India Patients Association (HAE IPA) brought together patients and caregivers for a dedicated community meeting in Bengaluru. Hosted at Manipal Hospital Yeshwanthpur, the event welcomed around a dozen patients and caregivers from Karnataka and Tamil Nadu, creating a warm and supportive space for sharing experiences, learning, and connecting with others living with Hereditary Angioedema (HAE).
The meeting opened with welcoming remarks from Pravalika Meduthuri, who introduced the mission of HAE India Patients Association and the importance of building a strong patient community across India. She emphasized that, beyond medical care, patient connection and advocacy play a vital role in improving the lives of people affected by rare diseases.
Participants were also given a glimpse of the global HAE community. A session from HAEi was introduced by Fiona Wardman, HAEi’s Executive Vice President and Chief Advocacy Officer, who spoke about the organization’s worldwide efforts to support and empower people living with HAE. This was followed by a presentation from Fanny Schappler, HAEi’s Regional Patient Advocate for South Asia, who shared what tools are available to patients and caregivers, such as the HAE Companion app, the HAE TrackR app, emergency cards, and several information brochures.
One of the key discussions focused on the National Policy for Rare Diseases (NPRD) and how patients can access government support through India’s Rare Disease Centers of Excellence (CoE). The session helped patients better understand the process and the opportunities available to support their treatment journey.
The meeting also brought important clinical perspectives. Dr. Ankur Jindal explained the medical management of HAE, including recognizing symptoms, understanding treatment options, and the importance of timely care during attacks. Complementing this medical overview, Dr. Philip Li from Hong Kong delivered a thoughtful and inspiring presentation, sharing Asian perspectives on HAE care and encouraging patients and families to “never give up” in their journey toward proper diagnosis and treatment. His message resonated strongly with attendees and highlighted how progress in research, treatment, and patient advocacy is improving outcomes for people living with HAE around the world and in Asia in particular.
Beyond medical information, the meeting also addressed the real-life challenges faced by patients. Discussions explored barriers such as delayed diagnosis, difficulties accessing treatment, and the emotional impact of living with a rare disease. Participants learned about available patient support initiatives, including community-based programs designed to help guide patients through their care journey.
A particularly meaningful part of the day was the Patient Stories & Community Voices session, where individuals shared their personal experiences of living with HAE. These stories created a powerful moment of connection, reminding everyone in the room that they are not alone in facing the challenges of this rare condition.
In the afternoon, the conversation broadened to the wider rare disease landscape in India. Prasanna Shirol, President of ORDI (Organization for Rare Diseases India), spoke about the importance of patient advocacy in shaping policies and improving access to care. His session encouraged patients and families to recognize the strength of collective voices in driving change.
The meeting concluded with an interactive panel discussion and Q&A session, where participants had the opportunity to ask questions directly to clinicians and advocates. Topics ranged from managing HAE in everyday life to navigating healthcare systems and accessing treatment support.
The event ended on a warm and hopeful note, with patients, caregivers, clinicians, and advocates continuing conversations during high tea and networking. For many participants, the gathering was not only an opportunity to learn more about their condition but also a chance to build friendships, share experiences, and strengthen the HAE community in southern India.
Together, the day served as an important reminder that knowledge, community, and advocacy can empower patients and families to better navigate their HAE journey.
