The Importance of Volunteer Support

The Importance of Volunteer Support

    The ECD Global Alliance (ECDGA), a non-profit dedicated to supporting people affected by an ultra-rare blood cancer known as Erdheim-Chester Disease (ECD), honors deserving volunteers during National Volunteer Week. ECDGA volunteers are the life force of...
2021 ECD Awareness Week

2021 ECD Awareness Week

  Erdheim-Chester Disease Awareness Week September 13 – 18, 2021 #SharingIsKey #ECDawareness #AwarenessWeek   The ECD Global Alliance is hosting its 7th Annual Erdheim-Chester Disease Awareness Week! Join our community in raising awareness of the...
Climbing for the Cure

Climbing for the Cure

The member-hosted ECD Virtual Run/Walk this month has served to raise funds for research on this rare disease, increase awareness, and pull together supporters for all those fighting ECD.  The Atnip family gathered on the recent Father’s Day to reach new heights...
Effects of a rare disease: beyond symptoms and treatment

Effects of a rare disease: beyond symptoms and treatment

Facing a rare disease can seem like an uphill battle from time to time. The side effects of rare diseases, such as ECD are not only seen and felt from the disease itself or the treatments received. Many patients are faced with other effects that are not direct...