https://www.qub.ac.uk/sites/RareDisease/News/190126FragileXsurvey.html
Studying the Impacts on Quality of Life for Parents/Caregivers of Fragile X, 22Q, Rett Syndrome and Angelman Syndrome.
rare diseasenewsfocussupportingthroughout
https://www.qub.ac.uk/sites/RareDisease/News/ShareyourviewsonNICEsdraftqualitystandardforrarediseases.html
The standards describe high-quality care in priority areas for improvement.
rare diseasenewsfocussupportingthroughout
https://www.foxnews.com/health/man-dies-from-extremely-rare-disease-after-eating-squirrel-brains
A man in New York developed an extremely rare and fatal brain disorder after he ate squirrel brains, according to a new report of the man's case.
rare diseasemandiesextremelyeating
https://www.rnz.co.nz/news/national/122305/treatment-denied-to-dying-woman-with-rare-disease
A woman with a rare neuromuscular disease who has only a year to live, has complained to the Ombudsman about a decision by Pharmac to deny her treatment.
rare diseasernz newstreatmentdenieddying
https://www.imperial.ac.uk/news/233874/new-study-explores-unique-approach-treat/
New research into using a novel approach to alter gut bacteria to treat a rare disease where the body attacks its own liver has been given funding.
new studyunique approachexplorestreatrare
https://www.novinite.com/articles/225288/State+to+Cover+Rare+Disease+Treatment+Costs+In+Bulgaria
The government will fund medications and specialized foods for individuals over 18 with rare diseases, but eligibility hinges on starting treatment before...
rare diseasetreatment costsstatecoverbulgaria
https://www.rareyouthrevolution.com/
RARE Youth Revolution is a news and opinion digital platform, dedicated to powering up the voices of the youth rare disease community.
youth revolutionrarediseasenews