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Rare Disease Day at IndoUSrare
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IndoUSrare marked Rare Disease Day this year with a webinar style event aimed at highlighting the commonalities and the contrasts in the patient experience in the US and Indian subcontinent. The event featured a conversation with Guest Speakers, Ms Christine Von Raesfeld (Founder CEO of People with Empathy), and Dr. Sai Kaustuv Dasgupta (Wheelchair Warrior of India), who provided their perspectives of living with rare diseases drawing from their own Rare experience and journey.
The session was followed by the announcement of Awards for the ART4RARE contest.
In case you missed it, you can watch the recording of the event here.
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ART4RARE 2021
IndoUSrare invited children from all over the globe to participate in our first ever Annual Kids Art Contest. We received a total of 35 submissions from across the category which were judged independently by two expert judges
Awards were announced during the Rare Disease Day at IndoUSrare event.
You can find all the submissions and the awardees on the IndoUsrare website here.
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Why US-India collaborations are crucial to accelerating therapies for rare diseases?
IndoUSrare Founder and Chairman, Harsha Karur Rajasimha
presented the IndoUSrare perspective to representatives of Govt of India, NITI Aayog, AIIMS, and the Health Secretary at the Global Rare Disease Conference - Blueprint for India, co-hosted by NITI Aayog and People to People Health Foundation - Asia
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IndoUSrare advocated for Indo-US collaborations to accelerate therapies for rare diseases as part of Rare Across America 2021
IndoUSrare Founder Chairman, Harsha Rajasimha met with Senator Mark Warner (D-VA) and Senator Tim Kaine (D-VA) offices, and IndoUSrare Board Director, Narayanan Govindarajan met Senator John Cronyn (R-TX).
IndoUSrare requested their leadership at the Bipartisan India Caucus and that they join the bipartisan and bicameral Rare Disease Caucus to Save 100M People with Rare Diseases (US-India combined) by Making Telemedicine & Gene Therapy a Priority for US-India ties.
Rare Across America is organized by the Rare Disease Legislative Advocates (RDLA).
RDLA is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations.
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IndoUSrare Founder and Chairman Harsha K Rajasimha spoke about his journey as a social entrepreneur and rare disease advocate. with Effie Parks on her podcast show, Once Upon a Gene
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Patients Alliance Membership Program
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Inviting Rare Foundation Members and Strategic Partners to join us in collectively building Collaborative Bridges between the US and the Indian Subcontinent.
Learn more about our Patients Alliance Program here
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Our mission is to support and empower our member organizations in fostering US-India cross border collaborations for formally organized and established disease specific patient foundations.
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Your donation helps us sustain this humanitarian cause
You can make a tax-exempt donation by:
- Zelle transfer using email ID: nara.govind@indousrare.org
- Personal Check to "IndoUSrare" and mail it to 13687 Neil Armstrong Ave Herndon VA 20171 USA
- Direct donation to IndoUSrare via PayPal
THANK YOU!!
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IndoUSrare Supporters and Partners
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