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We are excited to welcome Dr. Gitismita Naik as Epidemiology Scientist at IndoUSrare
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Dr. Naik is an MD in Community Medicine and has 7 years of experience in medical research and teaching. She has an interest in equitable healthcare for all, epidemiology, maternal and child health and women's health. She is a recipient of the India Health Policy and Systems Research (HPSR) fellowship in 2021.
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At IndoUSrare, she will be leading IndoUSrare's epidemiology project that aims to scientifically estimate the prevalence and incidence of a sub-set of rare diseases in India, US and globally, and to generate scalable methodologies to expand this effort to other rare diseases in low-and-middle income countries like India.
You can reach out to her at gitismita@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.
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Welcoming our new Patients Alliance Member
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STXBP1 Foundation
Disease Focus: STXBP1 Encephalopathy
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The STXBP1 Foundation is a 501(c)3 dedicated to raising awareness and finding a cure for STXBP1 Encephalopathy, a rare neurodevelopmental condition and genetic epilepsy.
The Foundation is focused on advocacy, driving research, and providing STXBP1 families and their physicians with information and resources. They work with families, physicians, scientists, and pharmaceutical innovators.
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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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Thanks to the generosity of so many people, IndoUSrare's HELP INDIA BREATHE campaign, a Fundraiser aimed at Covid-19 Relief rare disease patients in India raised $2495 allowing us to procure 2 Oxygen Concentrators and 50 Pulse Oximeters for use in places and people in India that need them the most. We have deployed the pulse oximeters at different community hospitals in India to be used by patients in home isolation.
The Oxygen Concentrators are available for patients or families affected by rare diseases in India, one is available in New Delhi and one is in Bangalore.
If anyone in your community in India has an immediate requirement for an Oxygen Concentrator, please reach out on our social media or write to us at admin@indousrare.org.
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Webinar Panel: COVID-19 Vaccine Safety for Rare Disease Patients
Ask the Experts Session
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IndoUSrare was honored to host an information session for patients and families affected by rare diseases or other medical conditions.
Our Panelist Experts, Prof(Dr) Narendra K Arora from the the INCLEN Trust International and Dr. Madhulika Kabra from AIIMS, Delhi answered numerous questions from the rare disease community and allayed fears and concerns related to vaccines.
The general guidance is that getting any COVID vaccine is better and safer than not getting any at all.
For those who could not attend and for those seeking advice for specific situations where caution is recommended, we have the full video recording available here on the IndoUSrare YouTube Channel.
An information sheet will also be shared soon.
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Webinar - Clinical Trials: The Hope to Cure Rare Diseases
Guest Speaker: Mohamed Duklef
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The fourth IndoUSrare webinar held in May 2021, featured Epidermolysis bullosa patient and advocate Mohamed Duklef, who spoke about his experiences trying to find a cure for his rare disease in his talk titled, "Clinical Trials: The Hope to Cure Rare Diseases".
Mr. Duklef has been an ongoing participant in clinical trials since 2015 and has engaged in trials at Stanford University, University of Minnesota, and Colorado Children’s Hospital. He works as a pharmacist and is the International Liaison of EBlifestyle, an EB nonprofit organization.
In case you missed it, the recording is now available here on the IndoUSrare YouTube channel.
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ROAR4RARE (Greenville, SC)
A walk run event to raise awareness about rare diseases
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IndoUSrare, in partnership with the India Association of Greenville (IAG), organized “ROAR4RARE”, a Walk/Run event to raise awareness for rare diseases in Greenville, SC.
We thank all Greenville, SC community members who came together to make this event a great success.
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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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