Fundraising, storytelling, and advocacy are the focus of this year’s International Batten Disease Awareness Day, observed annually on June 9…
Articles by Mary Chapman
A Sept. 28 webinar, hosted by Xtalks, will explore the challenges of clinical research in pediatric rare disorders,…
From sharing stories on social media — using hashtags like #BattenDay2023 and #BattenAdvocatesForACure — to wearing something orange this June…
The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person…
From participating in a virtual 5k to sharing personal stories, supporters are set to mark International Batten Disease Awareness Day,…
The Batten Disease Support and Research Association (BDSRA) will present a special international edition of its virtual Ask-An-Expert series today.
At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases…
To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes…
Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual…
From participating in a virtual 5K to sharing family stories and videos, supporters are gearing up for International Batten Disease…