Mary Chapman,  features writer—

The Scleroderma Research Foundation’s (SRF) annual “Cool Comedy – Hot Cuisine, A Tribute to Bob Saget” event, a recent evening of levity to raise scleroderma research funds and awareness, and to honor a longtime supporter, garnered more than $1.2 million. Some 500 people attended the luminary-laden event,…

With an emphasis on sparking conversations about the complex chronic autoimmune disease, supporters are observing Scleroderma Awareness Month this June with a host of events and activities — including social media campaigns. World Scleroderma Day is on June 29. In addition to the general public, the awareness and fundraising efforts…

The Scleroderma Research Foundation‘s annual star-studded “Cool Comedy, Hot Cuisine” event will this year honor the late comedian and actor Bob Saget, who spearheaded the fundraiser for three decades. Saget, who died in January, had worked for more than 30 years to promote scleroderma research following the death of his…

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…

The Scleroderma Foundation is announcing that it has more than doubled its annual research funding, to $2.7 million, and increased the amount of its grant awards by $50,000, to $200,000. To accommodate the change in funding opportunities — effective for the 2022 grant-funding cycle — the nonprofit organization has…

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,…

From joining a walk-a-thon to sharing videos of themselves saying the rare disease’s hard-to-pronounce name, supporters are marking Scleroderma Awareness Month, observed each June. World Scleroderma Day is June 29. The mission is to raise awareness among the general public and to educate policymakers, public authorities, industry representatives, scientists, and…

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…