Mary Chapman, features writer —

The Assistance Fund (TAF), an independent patient assistance organization that helps patients and families with out-of-pocket healthcare costs, has expanded its program to include people with Rett syndrome and their families. The fund seeks to help with expenses such as health insurance premiums and copays, therapy administration costs,…

As part of its Project Seva, Vezbi Community Super App is supporting the International Rett Syndrome Foundation (IRSF) through a $500,000 equity donation and the creation of tailored microapps for the Rett syndrome community. The community-focused Super App was created to consolidate and organize all life aspects…

From starting a Facebook fundraiser to handing out personalized information cards about Rett syndrome, supporters worldwide are marking Rett Syndrome Awareness Month, which occurs each October. Now, the International Rett Syndrome Foundation (IRSF) is offering up a host of ways people can “Go All In This October” to…

The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…

To support scientific investigations that seek therapies and a cure for Rett syndrome, the International Rett Syndrome Foundation (IRSF) is investing $2.3 million in research grants. The IRSF worked with its scientific advisory board (SAB) to determine the studies to advance. To develop treatments for the rare…

Supporters worldwide are marking Rett Syndrome Awareness Month, set aside each October to bring attention to Rett syndrome, a rare neurodevelopmental disorder that’s estimated to affect 1 of every 10,000 girls, and fewer boys. From posting on social media to sporting temporary tattoos, participants globally are raising awareness and…

At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…

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,…

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…