Use the information and support resources provided to help with taking the next steps beyond receiving a rare diagnosis.
Assistance to guide searching for information about a rare disease.Read more
Next steps after a diagnosis, health care records and general information about choosing therapies.Read more
Help with passing on information regarding health, educational and psychosocial needs.Read more
Guidance and support for individuals and families living with a rare condition.Read more
Linking with others to share experiences and first-hand knowledge.Read more
Find out about research opportunities and registries to collect information.Read more