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Patients Alliance Membership Program
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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.
We wish to welcome all our new Patients Alliance Members to our community
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Disease: X-linked adrenoleukodystrophy (ALD)
ALD Connect is a non-profit organization that brings together patients, families, physicians, scientists, advocates, and industry. Their mission is to improve health outcomes for patients with X-linked adrenoleukodystrophy (ALD) by empowering patients, raising awareness, and accelerating the translation of scientific advances into better clinical care.
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Disease: Rare Autoinflammatory conditions
RACC-UK is the only UK registered patient-led Charity that offers a lifeline to patients, parents and carers who are affected by a range of Autoinflammatory conditions. They provide a support group for patients and carers with Autoinflammatory Conditions in the UK
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Disease: Dyskeratosis Congenita and Telomere Biology Disorders
Team Telomere's mission is to provide information and support services to families worldwide affected by Dyskeratosis Congenita and Telomere Biology Disorders, to encourage the medical community’s research in finding causes and effective treatments, and to facilitate improved diagnosis by educating medical providers.
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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 Patient Alliance Member, Cure VCP Disease Inc recently investigated the phenotypic diversity and patterns of weakness in the Cure VCP Disease Patient Registry. Read more about this work in their article, Phenotypic diversity in an international Cure VCP Disease registry, published in the Orphanet Journal of Rare Diseases.
The Cure VCP Disease, Inc. Annual report 2020 provides more details of the organization's accomplishments, and future goals and projects.
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A social entrepreneur on a mission to bridge the clinical research divide between the U.S. & India
Read the full blog article by IndoUSrare founder, Harsha Rajasimha, featured in Possiabilities
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Harsha Rajasimha, IndoUSrare founder and Chairman, has written about his journey as a social entrepreneur and rare disease advocate. This blog has been featured in Indiaspora
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IndoUSrare submitted a document with comments on India's fifth National Science, Technology and Innovation (STI) STIP 2020 policy.
The document consisted of recommendations from our perspective as an organization on a mission to address the unmet needs of rare disease patients of Indian origin, and included suggestions from our Patients Alliance Members and partner organizations.
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IndoUSrare Webinar Series
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The third IndoUSrare Webinar conducted on 13 January 2021, featured guest speaker Dr. Jayesh Sheth, Chairman of the Foundation for Research In Genetics and Endocrinology (FRIGE) - Institute of Human Genetics, India.
Dr. Sheth spoke of his experiences in rare disease diagnostics and research in an engaging talk titled Finding Commonalities in Rare Diseases: The Indian Scenario
In case you missed it, you can watch a recording on the IndoUSrare YouTube channel
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The IndoUSrare Webinar Series is a key dissemination program featuring eminent speakers of interest to rare disease stakeholders from the US and the Indian subcontinent.
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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
- Shopping for your day to day needs on Amazon Smile Every time you order on Amazon using this link, Amazon donates 0.5% of eligible purchases price to IndoUSrare
- Direct donation to IndoUSrare via PayPal
THANK YOU!!
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