Posts tagged Family Advisory Committee
The Loneliness of an Orphan Disease Diagnosis
The Loneliness of an Orphan Disease Diagnosis

A rare disease is defined as any disease that affects a small percentage of the population, often fewer than 200,000 people in the United States.  Oftentimes, due to the rarity of these diseases and lack of a large patient population, gaining support and resources for treatment options is a challenge. Receiving a diagnosis of one of these rare diseases can leave an individual or family with a very isolated and lonely feeling

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Rare Retinal DiseaseGuest UserFEVR, Family Advisory Committee
What to Expect When You Don’t Know What to Expect
What to Expect When You Don’t Know What to Expect

Sit back and be amazed. Your child is a gift.  All children are amazing and special in their own ways.  All children are unique.  We have three boys, and we adore each one for their individual personality. We certainly don’t have a favorite child.  But I will say, without reservation, Sean has opened our eyes, our hearts, and our minds to a whole new world. 

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Rare Retinal DiseaseGuest UserFamily Advisory Committee, Norrie Disease