Roadmap Rare diagnosis

After the journey to find an answer, receiving a rare diagnosis can be a time of mixed feelings and more questions. Although information and support specific to the diagnosis is often limited, general resources can help with many aspects of daily life as well as next steps beyond the search. 

 

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 taking the next steps beyond receiving a rare diagnosis.

Rare diagnosis
Staying <br />Up to Date

Staying
Up to Date

Assistance to guide searching for information about a rare disease.

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Ongoing<br />Management

Ongoing
Management

Next steps after a diagnosis, 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 a rare condition.

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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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