Embedding patient experience at the heart of rare disease research

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Last Posted: Mar 02, 2018

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• Embedding patient experience at the heart of rare disease research  
  Genomics England, Feb 28, 2018
• TRAPPED - an insight into two sisters' struggle to access treatment for a rare genetic disease.  
  Al-Attar Mariam et al. Orphanet journal of rare diseases 2018 Feb 13(1) 37
• Chris Bombardier: Reaching New Heights  
  He is the first person with hemophilia to summit Mount Everest, Hemaware, Feb 2018
• Twin Sisters Share a Diagnosis — Tay-Sachs Disease — and a Desire to Make a Difference  
  Mayo Clinic Blog, Jan 2018
• Real Stories: The Power of Personal Stories for Communicating Genomic Information 
• The Lloyd family: Three sisters, Mary, Sandra and Kerry Lloyd all developed breast cancer within 15 months of each other  
  Genomics England, 2018

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