Globally coordinated by The European Organization for Rare Diseases (EURORDIS), and over 65 national alliance patient organisation partners, Rare Disease Day aims to increase awareness and promote necessary changes for the 300 million people worldwide living with a rare disease. Over 600 events will be taking place this year in...
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The University of Colorado Anschutz Medical Campus celebrated the global Rare Disease Day on February 28 with an event that highlighted the campus’ strengths in diagnosing and treating rare diseases and explored a vision for creating a regional rare disease hub. Campus experts, hospital and community partners, patients, and families...
For much of my life, I couldn’t imagine a better world for those of us with disabilities, rare diseases, and chronic conditions. I just wasn’t thinking about the disability rights movement. I didn’t feel like I fit into what I had perceived as “disabled,” and I didn’t really want to....
Manila, Philippines — Healthcare stakeholders and advocates have lamented that the funding for implementing Republic Act 10747 or the Rare Disease Act remained “inadequate.” The remark was made during a forum on Wednesday titled “Sustaining Gains and Balancing Priorities: Implementation of the Rare Disease Act,” organized by the Stratbase Group,...
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...
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...
Rare diseases are a serious public health concern in India, with an estimated burden of about 80 to 96 million cases reported annually. Moreover, 70-80% of rare diseases are of genetic nature and thus are asymptomatic. Here are their causes, signs, symptoms and treatment
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...