News - Rare Disease

Here are the latest news stories from Alex TLC and about topics we think you'll find useful.

Rare Diseases Campaign by Medics 4 Rare Diseases

September 2023

Rare Diseases Campaign by Medics 4 Rare Diseases Medics 4 Rare Diseases have partnered with MediaPlanet to bring together the Rare Diseases campaign. Read about the importance of research and drug development and the need for access, funding and support to bring together and benefit the Rare Disease Community.

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Thoughts into Action Project

September 2023

Metabolic Support UK’s report is now available to view What is good quality of life for people living with inherited metabolic disorders?

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DCP Action Survey

August 2023

In response to the government’s “Working Together to Safeguard Children” guidance The government has launched on a revised version on “Working Together to Safeguard Children”, the multi-agency guidance on children’s social care. The guidance must promote support for disabled children. Families are so often underrepresented in consultation responses.

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