Resources

Also see:
Other Story Galleries

How-To for Storytellers

Using Personal Stories for Advocacy

IDEAS: Storytelling & Health

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:

• Acid Maltase Deficiency Association (AMDA), Meet the Patients

• Acromegaly.care, Patient & Caregiver Stories

• Alliance for Cryoglobulinemia, Patient Stories

• Alström Syndrome UK, Inspirational Stories

• Always in Hope, a Rare Documentary

• Ben's Friends Patient Communities - support group for patients affected by rare diseases

• Ben's Friends: Patient Support Communities YouTube

• Ben's Friends: Patient Support Communities, We're In This Together: Stories & Tips from Patients with Rare Diseases (ebook)

• CheckOrphan: rare, orphan and neglected diseases

• Children's Gaucher Research Fund, Family Stories

• CNN iReports, Living with a rare disease?

• David R. Cox Prize for Rare Compassion | Essay Contest for Medical Students

• EURORDIS, Living with a Rare Disease (stories)

• EURORDIS, Photo Contest Gallery (2015 Winners Announced)

• EURORDIS TV

• EveryLife Foundation for Rare Diseases, Rare Artist (2015 Winners Announced)

• Ewing Marion Kauffman Foundation, Here. Us. Now. (documentary film)

• Facing Fabry Together Film 

• FH Foundation, Personal Stories

• FMD Chat, Patients' Stories

• Gaucher Stories

• Genetic Alliance UK, Video Stories

• Genzyme, Expression of Hope

• Global Genes, RARECast Podcasts

• Global Genes, RAREDaily 

• HAEi, Patient Stories

• iBellieve Foundation (MPS II), Stories

• Inspire "Together we're better"

• International Pompe Association (IPA), Patient Testimonials 

• International Pompe Association (IPA), Testimonials on Video

• Jeans for Genes, Who We Help (films and stories)

• Little Miss Hannah Foundation, Hannah’s Story

• Living in the Light (photography)

• Mashable, 12 activists share what they want you to know about living with a rare disease by Katie Dupere

• Mighty, The, Stories tagged: Rare Disease

• Mighty, The, 24 Things People With Rare Diseases Wish Others Understood

• National Fabry Disease Foundation, Telling Our Stories

• National MPS Society, Courage Pages

• N.Crianças Especiais, Our Special Children #RareDisease News

• NORD, Patient Stories 

• NORD, Rare Disease Patient Stories YouTube

• NORD, Running for Rare Diseases (#Running4Rare)

• Patient Worthy

• Philippine Society for Orphan Disorders, Meet The Patients

• Rage Against the Minivan, What I want you to know about living with a rare disease

• RareConnect (EURORDIS) 

• Rare in Common (videos)

• Rare Disease Day, Tell Your Story

• Rare Disease Report

• Rare Disease Society of South Africa, Patient Stories

• Rare Disease United Foundation, Beyond the Diagnosis Art Exhibit 

• Rare Disease UK, Stories from Rare Disease Patients and Families 

• Rare Lives, a photographic journey across Europe

• Rarely Defined - Erica J. Thiel life with but not defined by MPS I, blog 

• Rare Voices Australia, The Australian Experience of Living with a Rare Disease: personal stories

• RUN (Rare & Undiagnosed Network), Blog

• Positive Exposure: The spirit of difference  

• Same but Different, Rare Project

• Saving Case & Friends, Project Alive

• Shire, Spotlight on Gaucher Video Contest

• Support for People with Aspergillosis, Patients' stories

• SWAN UK (Syndromes Without A Name), Blog 

• Telling Stories: Understanding Real Life Genetics

• TGen Center for Rare Childhood Disorders (C4RCD), Every Child Matters (stories)

• TGen (Translational Genomics Research Institute), YouTube

• TLC, Two In A Million (series)

• Trial by Fire film about complex regional pain syndrome (CRPS) directed by Charles Mattocks

• Undiagnosed Diseases Network, Blog

• Utah Rare, Blog

• World of Rare Diseases, The (Ο Κόσμος των Σπανίων Παθήσεων) (Greek)

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.

• Rare Artist Contest 2015: Children 4-11, a program of The EveryLife Foundation for Rare Diseases  

• Spider Who Never Gave Up, The by Travis Flores relating his experiences living with Cystic Fibrosis

• Warrior Baby & Little Wish storybooks from Wylder Nation 

Stories 4/By Youth & Young Adults

• Chronic Illness Diary Of A Young Adult, The

• Difference Diaries: Giving voice to young adults with defining difference

• Living with Duchenne Muscular Dystrophy from the Takin' Charge Project 

• Rare Artist Contest 2015: Teen 12-18, a program of The EveryLife Foundation for Rare Diseases 

• Sick Chicks: We Are Stronger Together

• 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. 

Visit:
Other Story Galleries

How-To for Storytellers

Using Personal Stories for Advocacy 

IDEAS: Storytelling & Health