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Fundraising, storytelling, and advocacy are the focus of this year’s International Batten Disease Awareness Day, observed annually on June 9 to bring attention to the group of inherited neurological conditions thought to affect about 1 in every 100,000 individuals globally. The overarching aim of the worldwide event is to…
A Sept. 28 webinar, hosted by Xtalks, will explore the challenges of clinical research in pediatric rare disorders, along with strategies in decentralizing clinical trials to aid in recruiting and enrolling patients. Registration is required for the free hour-long webinar, titled “The Art of Decentralizing Pediatric…
From sharing stories on social media — using hashtags like #BattenDay2023 and #BattenAdvocatesForACure — to wearing something orange this June 9 to participating in a 5K fundraising challenge, supporters globally are poised to mark this year’s International Batten Disease Awareness Day. Observed annually, the June 9 Awareness Day calls attention…
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…
From participating in a virtual 5k to sharing personal stories, supporters are set to mark International Batten Disease Awareness Day, observed annually on June 9. The goal of the global event is to raise awareness among the general public as well as legislators, industry representatives, public authorities, researchers, and healthcare…
The Batten Disease Support and Research Association (BDSRA) will present a special international edition of its virtual Ask-An-Expert series today. The webinar will explore the latest in treatment development for this group of rare inherited neurological conditions, with an emphasis on gene therapy. The free interactive event, “Let’s Have…
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 participating in a virtual 5K to sharing family stories and videos, supporters are gearing up for International Batten Disease Awareness Day on June 9. The goal is to heighten awareness among the general public as well as lawmakers, public authorities, industry representatives, scientists, and health professionals. Awareness and education…
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