We are excited to welcome Nisha Venugopal to IndoUSrare team as Program Manager. Nisha joins us with a PhD in Life Sciences from the CSIR - CCMB, India, where she studied the role of the primary cilium in skeletal muscle satellite cells, and postdoctoral research experience at the Institute for Bioinformatics and Applied Biotechnology, India where she worked to profile global clinical trial registries. She has experience in the cell biology of cilium based rare diseases and policies related to clinical trial registries.
At IndoUSrare, she will be in charge of program execution and oversight of our research projects, including the RARE-X India Feasibility Study, the upcoming India Prevalence Study on Rare Diseases, and new programs development. She leads program execution and is will be involved in day-to-day operations of the organization. All patient alliance members are encouraged to write to her and get to know her better at nisha@indousrare.org.
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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: Multiple System Atrophy
Defeat MSA Alliance is an inclusive US based 501(c)(3) charity that aspires to balance efforts to support patients, educate medical professionals, raise public awareness and nurture promising research.
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Disease: MEPAN Syndrome
MEPAN Foundation works to create awareness for MEPAN Syndrome and fund research to discover treatments that can improve the quality of life for MEPAN patients and others with similar genetic conditions.
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Disease: Aarskog Syndrome
Our primary purposes are in identifying and supporting our patients, carriers and families living with Aarskog Syndrome, by creating better provision and support regarding access to long term, lifelong healthcare and management, education and improved research pathways.
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Disease: X linked Disorders
Remember The Girls' mission is to raise awareness of the many issues facing female carriers of X-linked genetic disorders; to provide a forum for X-linked females to share their stories, ask questions, provide and receive emotional support, and develop friendships; and to advocate for increased attention of the medical community to the physical and emotional issues of females who carry X-linked disorders.
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Disease: Spinal Muscular Atrophy
FSMA India aims to create awareness about the disease SMA in India, bring a treatment to India to cure all children and adults affected by SMA, and improve the quality of life of all SMA patients, We also aspire to bring treatments from abroad and also support SMA research locally.
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Disease: GNE Myopathy
NDF's mission is to enhance the quality of the lives of people living with GNE Myopathy through advocacy, education, outreach and funding critical research focused on treatments and a cure.
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Disease: SCN8A and DEEs (developmental and epileptic encephalopathies)
Wishes for Elliott is a family-based, non-profit organization dedicated to supporting research to improve the lives and prognosis of children struggling with SCN8A mutations and similar rare epilepsies.
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Disease: AutoImmune Polyglandular Syndrome Type 1
The APS Type 1 Foundation supports education, awareness, and fundraising for critical research related to APS Type 1.
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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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Education and Awareness Programs
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For our third webinar, guest speaker, Dr Jayesh Sheth, PhD, FICMHH, Chairman of the Foundation for Research In Genetics and Endocrinology (FRIGE) - Institute of Human Genetics, India will speak about his work in rare disease diagnostics and research.
His talk is titled, "Finding Commonalities in Rare Diseases: The Indian Scenario"
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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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Advocacy and Outreach Programs
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Our Research Program Manager, Nisha Venugopal, was part of a panel discussion on "Building Collaborations, Infrastructure and Research Sharing", at the Muscle and Diseases Meeting (Nov 6-7, 2020), co-organized by WWGM. She spoke about how IndoUSrare programs are built on cross border collaborations
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IndoUSrare participated in the STIP 2020 Consultation with Indian Diaspora session with India's Minister for Science and Technology, Dr. Harsh Vardhan on Nov 7, 2020. We shared our thoughts and comments on issues of interest to the rare disease community, such as policy frameworks to support global collaborations, including Rare Diseases, Orphan Drugs and Gene therapy, as topics for bilateral ties between India and US, and leveraging and creating shared facilities & resources for global collaborative research.
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Our Founder and Chairman Harsha Rajasimha spoke at the 13th Orphan Drugs and Rare Diseases Conference Global Congress 2020 on Nov 17-19, 2020. He shared his journey as a social entrepreneur and lessons learned over the last 20 years on why it takes concerted efforts between global advocacy and technology innovation to accelerate clinical research.
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Our Founder and Chairman, Dr. Harsha Rajasimha spoke at a panel discussion on "Pricing and Return of Investment (ROI) of Orphan Drugs" at the 13th Orphan Drugs and Rare Diseases Conference Global Congress 2020 on Nov 17-19, 2020.
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Your donation helps us sustain this humanitarian cause
You can make a tax-exempt donation by:
1. Direct donation to IndoUSrare via PayPal
2. Personal Check to "IndoUSrare" and mail it to 13687 Neil Armstrong Ave Herndon VA 20171 USA
3. 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
4. Our Founder Harsha Rajasimha is celebrating his Birthday in December and is raising funds for the charity on this occasion: https://www.facebook.com/donate/417657259428558/
THANK YOU!!
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