News - awareness

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

Leukodystrophy ACTIVITIES Month Posts

September 2023

Shared by our community members, staff and trustees 💙 Below are posts which have been shared on our social media channels throughout September: Our wonderful community member and volunteer, Nick, enjoys being on a sunny beach in Spain.

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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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Breaking Down Barriers Network Event

September 2023

Our CEO, Sara, attending the event The event will look at ways to improve organisational equality, diversity and inclusion (EDI) and how we engage with under-represented communities.

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