Mary Chapman, features writer —

Scores of people globally are marking Fragile X Awareness Month in July with activities aimed at calling attention to the genetic condition and community needs. World Fragile X Day is on July 22. The National Fragile X Foundation is marking the month by each day sharing a fact about…

The ABLE Employment Flexibility Act and better workplace opportunities for people with disabilities are among priorities for this year’s National Fragile X Foundation (NFXF) Advocacy Day, set for March 1. For more than 20 years, the nonprofit organization has brought advocates together in Washington, D.C., to meet…

To help find new fragile X treatments, the Robert & Ardis James Foundation has presented the Fraxa Research Foundation with a donor-matching challenge of up to $100,000. All funds raised will go toward research to develop therapies, and ultimately a cure, for fragile X, a genetic condition associated…

Many COVID-19 clinics are large, crowded, and on the boisterous side, which can be overwhelming for people with fragile X syndrome and other neurodevelopmental disorders needing to go there for vaccination. Such concerns led the UC Davis MIND Institute in Sacramento, California, to open a custom-designed clinic for vaccine administration. The…

The McQuade Center for Strategic Research and Development (MSRD) will collaborate with Sentinel Oncology for the clinical development of a potential breakthrough treatment for fragile X syndrome (FXS). Under agreement terms, the MSRD, which funds innovative early stage research and development programs, will work with the…

A Rush University Medical Center scientist will use a $4 million “cooperative agreement” from the Centers for Disease Control and Prevention (CDC) to better define the natural history of fragile X syndrome (FXS) and determine ways to improve the lives of patients and their families. The five-year study,…

From posting yard signs to swapping out exterior lighting, people across the U.S. are poised to mark Fragile X Awareness Month, observed each July. A global day — July 22 — is also set aside, with illuminations worldwide helping to call attention to the genetic disorder. Awareness and education…

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,…