Rare Disease Insights

Rare Disease Insights brings together selected external webinars, educational resources and patient organisation materials to support understanding across the rare disease landscape.

External resources

For Patients and Families

Webinars, educational materials and support from trusted organisations.

Patient Organisation

AMEND

Support and information for individuals and families affected by Multiple Endocrine Neoplasia conditions.

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Patient Organisation

British Porphyria Association

Information, education and support resources for people affected by porphyria.

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Patient Organisation

Genetic Alliance UK

UK rare disease policy updates, research news and community events.

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Patient Organisation

Neuroendocrine Cancer UK

Patient support services, educational materials and awareness initiatives.

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Webinar Series

NORD Webinar Series

Webinars covering diagnosis in children, navigating clinical trials and patient advocacy.

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Research Network

Rare Disease Clinical Research Network (RDCRN)

Resources explaining clinical research participation from a patient perspective.

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Webinar Series

Rare Disease Day: EURORDIS Webinars

Sessions focused on accessibility, healthcare professional engagement and patient voice.

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Professional resources

For Researchers, Clinicians and Advocates

Training, policy updates and collaboration opportunities.

Research Network

Cambridge Rare Disease Network Events

UK rare disease innovation events and cross-sector collaboration forums.

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Training

EURORDIS Open Academy

Training programmes for patient advocates involved in research and medicines development.

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Policy & Advocacy

EveryLife Foundation RDLA Webinars

Policy updates and legislative advocacy sessions relating to rare diseases.

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Research Network

NIH Rare Diseases Clinical Research Network

Updates on rare disease research networks and clinical study collaboration.

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How We Curate

Resources are selected based on relevance to rare diseases, credibility of the hosting organisation, and educational value. We do not receive payment for inclusion. External links open in a new tab and are provided for informational purposes. We do not control the content of external sites.

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