AdvocacyRSS6 days ago
Bruce Campbell, who has Pompe disease, is competing in the Absa Cape Epic, one of the world's toughest mountain biking races. Despite living with a rare muscle disease that affects his strength and endurance, he decided to take on this extreme athletic challenge. His story shows how people with rare diseases can push their limits and achieve goals they set for themselves.
WHY IT MATTERSThis story demonstrates that people living with Pompe disease can maintain active lifestyles and pursue challenging physical goals, which may inspire patients to discuss realistic exercise options with their care team.
AdvocacyRSS6 days ago
This article announces a support group meeting in Bethesda, Maryland for people with rare diseases. Support groups bring together patients and caregivers to share experiences, get information, and find emotional support from others facing similar health challenges. The meeting was scheduled for Saturday, July 17, 2027.
WHY IT MATTERSSupport groups provide patients with rare diseases a chance to connect with others who understand their condition and learn practical coping strategies from people with lived experience.
AdvocacyRSS6 days ago
This article announces a support group meeting in Bethesda, Maryland for people with rare diseases. However, the article content provided does not specify which rare disease(s) the support group focuses on, when meetings occur, or how to join. To get useful information, you would need to contact the organizers directly or visit their website.
WHY IT MATTERSSupport groups connect patients with others facing the same condition, reduce isolation, and provide practical tips for managing daily life — but only if you can find the specific group that matches your disease.
AdvocacyRSS6 days ago
This article announces a support group meeting in Bethesda, Maryland for people with rare diseases. However, the article content provided does not include specific details about which rare disease(s) the group focuses on, when meetings occur, or how to join. To get helpful information, you would need to contact the organizers directly or visit their website.
WHY IT MATTERSSupport groups connect patients with others who understand their condition, provide emotional support, and share practical tips for managing daily life with a rare disease.
AdvocacyRSS6 days ago
This article announces a support group meeting in Bethesda, Maryland for people with rare diseases. However, the article content provided does not include specific details about which rare disease(s) the group focuses on, when meetings occur, or how to join. To get the most out of this resource, you would need to contact the organizers directly for more information.
WHY IT MATTERSSupport groups connect patients with others who understand their condition, reduce isolation, and provide practical tips for managing daily life — but this article lacks the specific disease focus and meeting details needed to determine if it's relevant to your situation.