Rare Disease Day 2024 Raising Awareness And The Challenges Although advancements have been made in treatment, many sickle cell disease warriors still face difficulties accessing appropriate care Prince Middleton and Kate Middleton shared their support on X for a new book written by late rugby star and ALS advocate Rob Burrow's widow Lindsey Burrow
Rare Disease Day At Nih 2024 National Organization For Rare Disorders For the sickle cell disease community, September is an important time for advocacy and raising awareness, because it’s National Sickle Cell Awareness Month This year’s theme is “Sickle Cell Matters” Prince William is writing the foreword for an upcoming memoir by Rob Burrows' widow, Lindsey Inside the memoir, called "Take Care," and Rob's legacy advocating for MND before his death in June 2024 Six rare disease organizations have co-funded a $275,000 grant to Orrin Devinsky, MD, of NYU Grossman School of Medicine, to improve the diagnostic accuracy of parents/caregivers in classifying A father-of-two who returned home to find his 31-year-old wife had died in her sleep hopes to raise awareness of the rare and “horrendous” condition which took her life without warning Dale Lockwood,
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