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…
Read MoreWould you like to share your story of living with a rare disease? Tell us here
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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Why Patient Advocacy Organizations are Essential to Families Coping with Rare Diseases
In the US, a rare disease is defined as a debilitating condition affecting only one in 1,630 people. According to…
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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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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…
Read More
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