Author Archives: Mary Chapman

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

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,…

From sporting red gear to entering a spoken word contest, supporters globally are poised to mark World Sickle Cell Awareness Day, an annual event that takes place on June 19. The goal is to heighten awareness of sickle cell disease (SCD), an inherited blood disorder that affects millions of…

Two U.S. nonprofits are partnering to tackle legislative issues that benefit sickle cell disease (SCD) patients and their families. The partnership between the Sickle Cell Disease Association of America (SCDAA) and the Sickle Cell Community Consortium (SCCC) will include collaborating on the association’s annual Advocacy Day…

To inform sickle cell disease (SCD) patients and their caregivers about blood transfusions, which are commonly used to treat the disorder, the Sickle Cell Disease Association of America (SCDAA) is launching a set of educational materials. The pictorial booklet for children, and companion brochure for parents and caregivers,…

Registration is open for the 8th annual “Walk with the Stars,” one of the largest fundraisers organized by the Sickle Cell Disease Association of America (SCDAA) that supports the development of better treatments and a cure for sickle cell disease (SCD). All proceeds from the July 10 event…

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…

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…

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…

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…