News

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

Action on Rare Diseases

November 2021

Don’t miss out on giving an invaluable contribution to the #30millionreasons campaign by submitting YOUR personal reason why there needs to be change before the end of the month! Help to get as many reasons as possible… Rare 2030 Action is a campaign for a European Action Plan on rare diseases to ensure that no person living with a rare disease is left behind by 2030. Following the two year Rare 2030 Foresight Study proposing policy recommendations for a better future for people living with a rare disease, the rare disease community demands that their future is not left to luck or chance. The main recommendation from the study was for a European policy framework. Actions at Member State level alone, or legislative changes in specific areas are not enough. We need a new European collective strategy for rare diseases to bring Member States’ commitment to rare diseases under a common umbrella and mark a step forward in the post-COVID world.

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Alex TLC Research Summary

November 2021

Research Summary November 2021 Our latest Research Summary is ready to view, which includes information about recent and existing Leukodystrophy studies.

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