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At the PDA Annual Meeting this week in New Orleans, attendees had the chance to hear from EveryLife Foundation executive director and leader of a number successful initiatives, Julia Jenkins, on the economic impact of rare disease in the U.S. and Kelly Baker, a member of the Young Adult Rare...
The new Rare Disease Policy 2021 is a positive step, but more needs to be done, experts and patients in the sector have asserted. “Implementation through multi-stakeholder planning and equity consideration and strengthening sensitization/ awareness efforts, new-borne screening tests in every hospital to ensure early detection and treatment, insurance coverage,...
London, UK – Patients with rare diseases could benefit from a “revolution” in clinical trials that could see one-stop studies designed that provide robust results even with small numbers of participants. The CAPTIVATE node is part of the recently introduced UK Rare Disease Research Platform established as part of a...
February 25th was a busy day at the oval and the Recreation Complex. Many people showed up to give their support for the Canadian Organization for Rare Diseases (CORD). One of our own little citizens, 15-month-old Iris Mae McKechnie was diagnosed with infantile onset pompe disease and as a result...