Aim of the Registry

• To disseminate information regarding FA
  
  
• To study the spectrum of the disease in Indian children
  
  
• To provide access to information on current treatment and follow-up guidelines
  
  
• To serve as a foundation for collaborative studies
  
  
• To provide family support
  
  
• To provide antenatal diagnosis
  

Our plans

To inform all the leading hospitals and doctors all over India regarding FA and the need to report it to REFAIN. This would help in the analysis of the clinical spectrum of the disease in our country.

The course of the disease can be followed and appropriate intervention suggested. The treating physician can be informed about the latest developments in the management of FA.

Confirmatory test for FA can be arranged, if local centres have no such facility. Siblings can be screened and genetic counselling can be imparted to these families. If necessary, the extended family can also be counselled.