Roadmap No diagnosis

The process of trying to identify an underlying cause of signs and symptoms can be long and frustrating. Many children and adults remain without a diagnosis despite multiple assessments and investigations; it can be difficult to understand why it is not always possible to find an answer. Reasons may include a unique condition that has never been seen before, unusual presentation of a known condition or unknown significance of findings from a genetic test.

Use the information and support resources provided to help with the next steps for continuing life without a diagnosis.

No diagnosis
Staying <br />Up to Date

Staying
Up to Date

Assistance to guide searching for information about an undiagnosed disease.

Read more
Ongoing<br />Management

Ongoing
Management

Staying well, tracking signs/symptoms, requesting retesting and general information about choosing therapies.

Read more
Communication

Communication

Help with passing on information regarding health, educational and psychosocial needs.

Read more
Everyday Life

Everyday Life

Guidance and support for individuals and families living with an undiagnosed disease.

Read more
Connecting<br />With Others

Connecting
With Others

Linking with others to share experiences and first-hand knowledge.

Read more
Research & Registries

Research & Registries

Find out about research opportunities and registries to collect information.

Read more