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Blog

Homepage Blog
Would you like to share your story of living with a rare disease? Tell us here
Lena Jackson LGMD patient
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Patient Stories

Lena Jackson – Living with Limb Girdle muscular dystrophy

March 24, 2022
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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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Indian Diaspora with Rare Diseases, Patient Stories

On a Mission to Find Treatment for Autism

March 2, 2022
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   I want to help others. But first, I need your help! My name is Ishaan Holloway. I’m a 16…

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Indian Diaspora with Rare Diseases, Patient Stories

Rare Disease and Life Lessons

February 25, 2022
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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?

September 1, 2021
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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

June 15, 2021
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Hi, I am Harsha Rajasimha, Founder and Chairman of IndoUSrare, an independent non-profit organization focused on helping patients with rare…

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News

Unwinding the open data debate for rare diseases

June 15, 2021
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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

June 15, 2021
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Even as the world awaits a vaccine to tackle the global pandemic instigated by the novel coronavirus, there are over…

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News

Social entrepreneur on a mission to bridge the clinical research divide between the USA and India with advocacy and technology

June 14, 2021
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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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