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Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, find assistance and receive treatment. Eurordis-Rare Diseases Europe hopes to improve the current piecemeal treatment and support program with a holistic,…

People with rare diseases know that the right government policies can make a big difference in the quality of their own lives, and those of their caregivers. But most lawmakers aren’t experts in even one well-known disease — let alone the world’s estimated 7,000 rare disorders. So how does the…

In a newly published set of guidelines, experts give suggestions for the management of some of the behavioral symptoms of Huntington’s disease. By making these guidelines available to both specialists and non-specialists, the hope is that better care and support can be given more consistently to Huntington’s patients and their…