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People & Organizations

A total of 201 posts are filed under People & Organizations
Prince Harry Visits Siblings with CNL2 Batten Disease in London Hospital
Prince Harry has shown remarkable compassion. Prince Harry has shown extraordinary sweetness by visiting two children in hospital. It’s… Continue Reading
Rare Disease Researcher Elected to American Academy of Arts and Sciences 2017 Class
Thanks to Rare Disease Report for this piece.  You might not normally associate Batten Disease with comedian Carol Burnett, Grammy winner… Continue Reading
Leader in Cure, Care and Community for Duchenne Muscular Dystrophy CureDuchenne Launches New Website
CureDuchenne, the leading nonprofit focused on finding a cure for Duchenne muscular dystrophy, launched a new website today… Continue Reading
Finding Fabry: How One Diagnosis Can Save an Entire Family
April is National Fabry Disease Awareness Month Jack Johnson got a lucky start in life thanks to a small town doctor in Missouri who treated… Continue Reading
Rare Disease Martin McGuiness
Former Deputy First Minister, Martin McGuinness, Suffered From Amyloidosis Before Recent Death
Former deputy first minister of Northern Ireland Martin McGuinness fought a deadly rare genetic disease with links to his mother’s home… Continue Reading
John_Walsh_Alpha_1
Honoring John W. Walsh’s Alpha-1 Legacy
John W. Walsh, whose vision of a research foundation and a patient services organization for people with Alpha–1 Antitrypsin Deficiency… Continue Reading
Dan_Reynolds_Imagine_dragons
A Rockstar, Big Pharma, And an Advocacy Group Unite!
Missing out on important life events is par for the course in many chronic illnesses. Patients are sometimes forced to bail on family and… Continue Reading
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