Announcing IndoUSrare

My first encounter with a rare disease was about 10 years ago at the neurobiology, neurodegeneration and repair laboratory (NNRL Chief: Anand Swaroop) at the National Eye Institute, NIH. I was a genomics data scientist (consulting) back then analyzing next-generation sequencing (NGS) data sets from inherited retinal disease familial cases. As we were discovering novel rare and common mutations in FBN2 (an extracellular matrix gene) associated with macular degeneration in 2012 at NEI, I and my family were introduced to the sufferings and pain that over 300 million patients and families with rare disease(s) deal with world-wide. I had become the father of a child with Edwards Syndrome, a rare congenital disease. The baby was diagnosed at full-term birth and did not make it back home from the NICU (neonatal intensive care unit). I and my family were devastated. As we went through several months of soul searching and education, my eyes were opened up to the other side of rare disease research, patient advocacy. I decided to dedicate a certain percentage of my time volunteering for the rare diseases community. In the majority of my time, I decided to apply years of post-doctoral training in genomics and precision medicine towards accelerating the discovery and development of novel diagnostics and therapeutics for rare and orphan diseases.

After a decade of involvement in the rare diseases community spanning genomics research, policy, data sharing, technology consulting, AI and digital health, entrepreneurship, volunteering, and advocacy, for various non-profits in capacities ranging from volunteer, scientist, director, board member, co-founder, chairman, etc., having collaborated extensively with numerous pioneering organizations and individuals, I have gained unique insights into the world of rare diseases and orphan drugs from various stakeholder perspectives.

Realizing that enormous work is being done by numerous organizations globally, I teamed up with key opinion leaders and colleagues to identify the unmet needs and gaps by listening to the community members. There are about 4 Million Indian Americans representing the fastest-growing ethnic minority group in the United States and over 18+ million Asian Americans. The worldwide population of Indian or Asian origins is roughly half!!! Thus, IndoUSrare is born in the USA (the single largest funding nation for rare diseases research) to address the needs of these groups that no other organization is currently focused on.

IndoUSrare is a key member of the US-based non-profit organization “RARE-X”, a ground-breaking global rare disease data aggregation and sharing initiative.

Member, Rare global advocacy leadership council, Global Genes.

Roarforrare, a rare disease community awareness event involving arts, painting and walk/run to educate and express the unmet needs in creative ways. 

Represent global data and research disparity perspectives at various global rare diseases forums, events, and conferences.

I am extremely proud of and honored to announce the founding team members, advisors and collaborators who helped shape this vision and bringing the organization to life:

Our Board of Directors:

Sundeep Agrawal, MD, Colt Ventures, New York, NY

Charles Andres, Ph.D., RAC, Wilson Sonsini Goodrich Rosati Law Firm (WSGR)**, Washington, DC

Narayanan Govindarajan, MS, UWorld, Dallas, TX

Reena Kartha, MS, Ph.D., Center for Orphan Drug Research, University of Minnesota, MN

Sanath Kumar, MS, Amazon Web Services, Rare Dad of a child with gpx4 mutation, Seattle, WA

Harsha K Rajasimha, MS, Ph.D., Founder and Chairman, Herndon, VA

Frank Sasinowski, MS, MPH, JD, Regulatory Attorney, Hyman Phelps McNamara PC (HPM)** and Vice-chair of EveryLife Foundation for rare diseases, Washington, DC

Advisory Board Members*:

Ancha Baranova, Professor, George Mason University, Fairfax, VA

Nicole Boice, Global Genes and RARE-X, Orange County, CA

Vijay Chandru, Ph.D., FASc, FNAE, Founder, OPFORD Foundation, Bangalore, India

Stephen Groft, Pharm.D., Board Director of ICORD, Retired Director, NIH, Bethesda, MD

Tamanna Roshan Lal MB ChB, FAAP, FACMG, Co-Director & Medical Geneticist, Rare Disease Institute, Children’s National Medical Center, Washington, DC

Morrie Ruffin, Executive Director, ARM Foundation for Cell and Gene Medicine, Baltimore, MD

Rajesh Gooty, President, Lead America Inc., Baltimore, MD

Akkaraju Sarma, MD, Ph.D., FAAFP, Ellis Island Medal of Honor 2016 Recipient, Pennsylvania Resident

Team Members*:

Vij Senthilnathan, Director of partnerships, SFBayarea

Srinivas Seshadri and Rekha Narayan, Director of Roarforrare, SFBayarea

Shashi Nadig, Director of community engagement, Greenville, SC

Ashok Krishnamoorthy, Webmaster, Herndon, VA

* A full list of all team members and contributors will be updated and available on the website at the official launch in the near future. We welcome and encourage collaborations.

** IndoUSrare is grateful to the world-renowned law firm WSGR, our pro bono IP/corporate counsel and to HPM, our pro bono legal counsel on matters related to FDA drug regulatory issues.