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Joshua Hellmann Foundation for Orphan DiseaseJoshua Hellmann Foundation for Orphan Disease
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RESOURCES

ORPHAN DISEASE PATIENT AND FAMILY SUPPORT ORGANIZATIONS (HONG KONG) 

  • Children Catastrophic Disease Foundation (CCDF)
  • Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group
  • The White Rose Family Foundation 
  • Chinese University Hong Kong neonatal screening (Metabolic Diseases) 


NATIONAL AND REGIONAL ORPHAN DISEASE ORGANIZATIONS

U.S.A. : 

  • C.A.I.D. Foundation  (Stop Childhood Autoinflammatory Diseases)
  • Children’s R.A.R.E. Disease Network 
  • EveryLife Foundation for Rare Diseases 
  • Hide & Seek Foundation for Lysosomal Disease Research
  • National Organization for Rare Disorders (NORD)
  • Office of Rare Diseases Research, National Institutes of Health
  • United Mitochondrial Disease Foundation
  • Mesothelioma.net

United Kingdom :

  • Genetic Alliance UK
  • Rare Disease UK
  • The Lily Foundation

European Union:

  • BLACKWAN Foundation  (A Swiss Foundation for Research on Orphan Diseases)
  • European Organization for Rare Diseases (EURORDIS) 
  • Orphanet 

Australia:

  • SMILE Foundation

Canada:

  • The Canadian Society for Mucopolysaccharide & Related Diseases Inc.

China:

  • The Chinese Organisation for Rare Diseases (CORD)

Philippines:

  • Philippine Society for Orphan Disorders

Taiwan:

  • Taiwan Foundation for Rare Disorders (TFRD)


OTHER USEFUL LINKS

  • Genetic Alliance
  • Orphanet
  • Rare Disease Day
  • Rare Disease Search Engine
  • Sanford-Burnham Medical Research Institute

FOR ENQUIRies: JHFORPHANDISEASE@GMAIL.COM

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