Keira Mathewson is a very cute little girl, two months shy of her second birthday. She also has a brain disease that slows her development, reduces her movement and affects her speech. Keira, who lives with her parents Julie Lewis and Michael Mathewson at Brassall, will be one of the...
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DURHAM, N.C. — The Rare Cancer Research Foundation (RCRF) is proud to announce an exciting collaboration with Spanios aimed at propelling the discovery and validation of groundbreaking therapeutic options for rare cancers. This partnership, facilitated through RCRF’s innovative initiative, Pattern.org, marks a significant step towards addressing the pressing need for...
CHENNAI — When Latha could not wash utensils or even pick up a handkerchief from the floor, she did not realise that she was suffering from takaysus arteritis, ‘pulseless disease’ a rare disorder that occurs in Asian women. Surgeons at the city-based M R Hospitals — Dr S Saravanan, Dr...
It was only dumb luck that Jason Morgan found out about his illness. He experienced frequent muscle pain but without any remedy. Years of tests, blood draws, and unanswered questions only yielded an answer after Morgan’s doctor connected the dots between his mother and his aunt. He had Burton Muscular...
When we think about common diseases or health conditions, diabetes, heart diseases and the likes top the list. Rare Disease Day, which falls on the last day of February, is all about raising awareness for rare diseases. This year, February 28 will see people raising awareness about diseases that aren’t...
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...
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...