Social Media is Amplifying the Voices of Rare Disease Advocates
Living with a rare disease has consistently posed significant challenges, as patients often face difficulties in finding appropriate treatments or…
Read MoreWould you like to share your story of living with a rare disease? Tell us here
Educational Webinars: How They Educate and Empower the Rare Disease Community
The world of rare diseases is complex and often isolated. With thousands of rare conditions affecting millions globally, rare disease…
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The Role of a Rare Disease Organization in Promoting Patient Advocacy
Based on current reports, nearly 80% of rare diseases are genetic, with approximately 70% appearing in childhood. About 95% of…
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Addressing Depression and Anxiety in Rare Disease Populations
A standard definition of “rare diseases” has not yet been agreed upon by medical professionals in India. According to the…
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Rare and Life Changing – A Journey of Knowing An Unknown Rare Genetic Disorder
A bundle of joy was born on January 6, 1975, in India to middle-class parents. Little did they know the…
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In search of a correct diagnosis
In Search of the Right Diagnosis In 2008, one Sunday afternoon, in a city in Andhra Pradesh, Ravi, a three-year-old,…
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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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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…
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