Rare Disease UK - Genetic Alliance
Rare Disease UK is a long-standing and pioneering national campaign by Genetic Alliance UK that represents and unites everyone in the rare disease community.
Rare Disease UK (RDUK) is the national alliance for people with rare diseases and all who support them. RDUK works to improve the lives of those affected by rare diseases by advocating for timely diagnosis, better care, and access to treatments. The organization brings together patients, families, healthcare professionals, and researchers to share knowledge and push for policy changes that benefit the rare disease community.
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Citation Level
2008
English, etc
Website Key Features
Information Hub
A comprehensive resource offering detailed information on various rare diseases, including symptoms, treatments, and research updates.
Support Networks
Connects individuals and families affected by rare diseases with support groups and networks for shared experiences and advice.
Policy Advocacy
Engages in policy advocacy to influence healthcare policies and ensure the needs of the rare disease community are met.
Events and Webinars
Hosts events, workshops, and webinars to educate and raise awareness about rare diseases among the public and professionals.
Research Updates
Provides the latest research findings and clinical trial information relevant to rare diseases.
Patient Stories
Shares personal stories from individuals and families living with rare diseases to inspire and inform others.
Healthcare Professional Resources
Offers resources and tools for healthcare professionals to improve diagnosis and care for rare disease patients.
Additional information
Mission
To ensure that people living with rare diseases have access to timely diagnosis, treatment, and care.
Vision
A world where the lives of people affected by rare diseases are transformed through better diagnosis, treatment, and support.
Membership
Open to individuals, families, healthcare professionals, and organizations interested in supporting the rare disease community.
Collaborations
Works in collaboration with national and international rare disease organizations to amplify impact and reach.
Awards and Recognition
Recognized for its contributions to the rare disease community through various awards and accolades.
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