We've also started a listly of stories that makes it easy to find online stories and add your own to the growing list.
Rare Disease Story Galleries
The galleries below are great story sources and may also be places where YOU can contribute your story:
- Ben's Friends: Patient Support Communities, We're In This Together: Stories & Tips from Patients with Rare Diseases (ebook)
- EURORDIS, Living with a Rare Disease (stories)
- EURORDIS, Photo Contest Gallery (2015 Winners Announced)
- Ewing Marion Kauffman Foundation, Here. Us. Now. (documentary film)
- Jeans for Genes, Who We Help (films and stories)
- Living in the Light (photography)
- Mashable, 12 activists share what they want you to know about living with a rare disease by Katie Dupere
- NORD, Running for Rare Diseases (#Running4Rare)
- Rare in Common (videos)
- Trial by Fire film about complex regional pain syndrome (CRPS) directed by Charles Mattocks
Stories 4 Children
- Con gli occhi tuoi (With your eyes) (Italian)
- I Love You Natty: A Sibling's Uplifting Introduction to Down's Syndrome by Mia and Hayley Goleniowska
- Mauricio of Uruguay by Hepburn Ferrer and Justin J. Greene.
- Spider Who Never Gave Up, The by Travis Flores relating his experiences living with Cystic Fibrosis
Stories 4/By Youth & Young Adults
- Travis Flores Speaks On Living With (Rather Than for) His Rare Disease, RARECast Podcast by Global Genes
- Type III (Gaucher) Transition Booklet from the ‘Empowering Young Type III GD Patients to shape the Future’ project, Gauchers Association (UK)
Let us know of any corrections or changes to help keep this list current.
Other Story Galleries