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June 18, 2021 News by Mary Chapman

Get Ready for NORD’s Patient and Family Forum, Set for June 26-27

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

February 17, 2021 News by Marta Figueiredo, PhD

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare disease patients overall give their healthcare experience a medium-low rating, of 2.5 on a scale of 1 to 5,…

January 27, 2021 News by ForestRay

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide regulatory agencies are expected to pose little risk to the rare disease community, including to patients with compromised immune systems or those participating in gene therapy studies. That was the message of a recent…

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Recent Posts

  • Enspryng prevents relapses in NMOSD for up to nearly 9 years
  • Friends bonding over music and their similar maladies
  • Study links headaches in NMOSD to changes in the brain
  • An Oasis concert made hope feel possible again
  • Telehealth offers a new path for improving mental health in NMOSD
  • Living immune-compromised in a world that ignores personal space
  • How the Ontario wildfires threaten my health, given my NMOSD
  • Cost of Ultomiris for NMOSD may soon be reimbursable in Canada
  • When eye shadow and fingernail polish are types of treatment
  • Disability, depression after NMOSD diagnosis likely lead to job changes


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