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  • How far would you go to save your child’s life? Haoyang was born in Kunming in southwestern China two years ago with a very rare disease: Menkes Syndrome. The disease is a genetic disorder that impacts how copper – which is crucial for brain and nervous system development – is...
  • Digital communities have become support networks for patients of rare diseases, as well as professionals. They boost access to research, encourage advocacy, and aid evidence-gathering When Lucinda Andrews learned that her newborn son was only the 16th person in the world known to be diagnosed with an ultra-rare genetic disorder, she...
  • Last month, Jessie Jackson’s friends and family sang her happy birthday a little early. Jessie doesn’t turn 30 until Dec. 12, but for the past five years on the anniversary of her diagnosis, her parents have hosted a fundraiser. They weren’t taking any chances. Jessie inherited a rare genetic condition called GM1...

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100,000 American die of COVID 19 and we shut down the county and spend Trillions to fight it, HOWEVER each year a minimum of 135,000 American die from #RareCancers and next to nothing is done to protect the small biotechs which develop Orphan Drugs! http://myelomasurvival.com/myeloma-blog/manipulation-of-the-stocks-of-micro-cap-biotech-companies-is-killing-cancer-patients

This is simple but the critical step in getting immunocompromised pts on the right care path! @CheckOrphan @autoimmunitymd @SjogrensOrg @CreakyJoints @jeffsparks Who do they call?’: Patient, provider education crucial for managing outpatient COVID-19 https://www.healio.com/news/rheumatology/20211122/who-do-they-call-patient-provider-education-crucial-for-managing-outpatient-covid19?utm_medium=social&utm_source=twitter&utm_campaign=sociallinks

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