RARE News

UK charity PSPA raising awareness in news-style programme

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10 January 2024

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IGA celebrates 30th anniversary in 2024

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9 January 2024

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Sickle cell disease is not a joke

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19 December 2023

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Sickle Cell Disease Association of America Inc. statement about gene therapy approval

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15 December 2023

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PSPA celebrates after receiving £164,000 National Lottery funding to help people living with PSP & CBD

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13 December 2023

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Worthing couple take part in cooking challenge supported by celebrity chefs to raise funds for Muscular Dystrophy

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8 December 2023

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CureDuchenne raises more than $1.3 million at ninth annual Napa in Newport to help find a cure for Duchenne muscular dystrophy

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16 November 2023

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Exciting news: $100,000 in funding for Myhre syndrome research projects

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7 November 2023

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Rare Stories initiative illuminates lives in Northern Ireland rare disease community

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2 November 2023

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Pilbara Rare Care Centre to open in remote Western Australia

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31 October 2023

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CureDuchenne welcomes new executive director, vice president of medical affairs, and board members 

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25 October 2023

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Arthur Suckow, former co-founder and chief executive officer of DTx Pharma, joins CMT Research Foundation board of directors

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5 October 2023

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NHL all-star Ryan Getzlaf and CureDuchenne raise more than $500,000 at 12th Annual Getzlaf Golf Shootout

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29 September 2023

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CMTUK charity is one of the first UK charities to move from subscription-based membership to a discretionary donation-based charity

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28 September 2023

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Sickle Cell Disease Association of America holds national convention

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27 September 2023

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World Orphan Drug Congress Europe 2023

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27 September 2023

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Cooking challenge to raise funds for muscular dystrophy charity gets the backing of celebrity chefs and celebrities from across the UK

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26 September 2023