Author Archives: Mary Chapman

Grifols Doubles Factor VIII, IX Treatment Donations to WFH Aid Program

Grifols is expanding its commitment to the World Federation of Hemophilia (WFH) Humanitarian Aid Program, donating at least 240 million international units (IU) of blood clotting factors over eight years to consistently treat some 3,000 bleeding disorder patients in developing countries. The contribution, starting in 2022 and running through…

Supporters Prepare for World Hemophilia Day

From donning red gear to flooding social media, supporters are gearing up for World Hemophilia Day 2021 on April 17. The event is focused on raising awareness and understanding of the bleeding disorder that affects about one in 10,000 people globally. Organized by the World Federation of Hemophilia (WFH),…

Nominations Open for National Hemophilia Foundation Awards

The National Hemophilia Foundation (NHF) is calling for nominations for its Awards of Excellence, which honor members of the bleeding disorders community. The awards are for those who have helped improve the lives of patients with bleeding diseases, including those with hemophilia, through treatment and care, advocacy,…

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

NORD’s Caregiver Respite Program Continues Through Pandemic

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…