This year, the Rare Disease Day reception at Westminster welcomed the rare disease community. People with lived experience, organisations at the heart of this work and policy makers discussed everything rare, the progress made to date and the areas which still need addressing.
Rare Disease Day is an annual international event on the last day of February (February 28th, or 29th in a leap year) to raise awareness for the millions of people affected by rare diseases. The date is chosen to highlight how rare these conditions are, with 29 February being the rarest day of the year.
Our Chief Executive, Kerry and BDB, Lived Experience Coordinator Sophie were delighted to be invited, and took the opportunity to raise awareness of Alström Syndrome and highlight the needs of the rare community.
Full information, including a link to Genetic Alliance UK More than you can imagine: an anthology of rare experiences which was launched at the event can be found on their website HERE
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