Roadmap No diagnosis

Many children and adults remain without a diagnosis despite multiple assessments and investigations. General resources can help with many aspects of daily life as well as taking steps forward, even without an identified cause for signs/symptoms.

 

Tracking down resources can be time consuming, and many people find it difficult to know how and where to start searching. The roadmap provides a small number of direct, high-quality links as a starting point.

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.

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Ongoing<br />Management

Ongoing
Management

Managing and tracking signs/symptoms, requesting retesting, health care records and general information about choosing therapies.

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Communication

Communication

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

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Everyday Life

Everyday Life

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

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Connecting<br />With Others

Connecting
With Others

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

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Research & Registries

Research & Registries

Find out about research opportunities and registries to collect information.

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