Farber disease: A rare disease that hurts the young
The pain afflicted by the devastating Farber disease is experienced by the whole family When they first heard his slightly…
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Lena Jackson – Living with Limb Girdle muscular dystrophy
Hello, my name is Lena Jackson. I’m a mother of two children and a wife of 14 years. I’m also…
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On a Mission to Find Treatment for Autism
I want to help others. But first, I need your help! My name is Ishaan Holloway. I’m a 16…
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Rare Disease and Life Lessons
The whole point of living is to keep trying! This is my Mantra. I am a 26-year old research student…
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Why is it important to engage rare disease stakeholders in India with global clinical research?
With a mission to educate, empower, and advocate for patients with rare diseases in the US and India, the Indo-US…
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Announcing IndoUSrare
Hi, I am Harsha Rajasimha, Founder and Chairman of IndoUSrare, an independent non-profit organization focused on helping patients with rare…
Read MoreUnwinding the open data debate for rare diseases
Data is the new oil. The advancements in AI, data mining, big-data present enormous opportunities to build an open data…
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A social entrepreneur on a mission to bridge the clinical research divide between the U.S. & India
Even as the world awaits a vaccine to tackle the global pandemic instigated by the novel coronavirus, there are over…
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Social entrepreneur on a mission to bridge the clinical research divide between the USA and India with advocacy and technology
Dr.Harsha Rajasimha is a rare disease social entrepreneur globally recognized for his work in genomics data science, persistent advocacy, and…
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