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

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