Patients and families

Individuals and families who have received a new diagnosis of a rare disease can have many questions. If you are trying to find information about your rare disease or to understand what supports and services are available to you there is information on the links below that can help you. If you do not find the information that you are looking for, contact us.

 
Difficulty Finding Information Find Specialist or Service
Newly Diagnosed or Undiagnosed Benefits and Schemes
Rare Disease Support Groups Disability Information