Author Archives: Mary Chapman

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

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…

Jacob Family Pledges Up to $250K to FAST for Donation Matches

Philanthropists Ryan and Annie Jacob have pledged up to $250,000 to the Foundation for Angelman Syndrome Therapeutics, known as FAST, through a new donation matching program. The Austin, Texas-based couple, who have a son with Angelman syndrome, will match donations up to that amount through FAST’s fundraising initiative,…

Pro Racer Cameron Lawrence Will Fuel FAST Awareness at NASCAR

The Foundation for Angelman Syndrome Therapeutics, known as FAST, will get a high-octane boost when professional racecar driver Cameron Lawrence makes his debut at the upcoming NASCAR Camping World Truck Series. The inaugural event at the Circuit of the Americas will be broadcast live on Saturday, May 22 at…

FAST Launching 24-hour Provider-to-provider Seizure Hotline

Beginning in July, a global 24-hour emergency and urgent care hotline will be available for provider-to-provider consultations to appropriately manage issues, particularly seizures, related to Angelman syndrome. The free hotline is funded through an Emergency Care Consortium grant provided by the Foundation for Angelman Syndrome Therapeutics (FAST). The…

US Angelman Nonprofits Create Working Group for Legislative Advocacy

Two U.S.-based Angelman syndrome (AS) nonprofits have created a working group that aims to further awareness and treatment of the rare genetic disorder through legislative advocacy. The Foundation for Angelman Syndrome Therapeutics, known as FAST, and the Angelman Syndrome Foundation, called ASF, have formed a legislative group…

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…