The Bleeding Disorders Association of South Carolina’s “Ultra Rare Bleeding Disorders Support” exists to support and empower individuals and their families who are diagnosed or affected by rare bleeding disorders, such as Glanzmann’s Thrombasthenia, Bernard-Soulier Syndrome, platelet disorders and rare factor deficiencies. We help to facilitate educational and supportive opportunities to those affected by rare bleeding disorders. We aim to raise awareness to the general public and healthcare professionals.
Our goal is to help:
Upcoming Dates:
July 22 @ 7pm
September 2 @7pm
November 18 @ 7pm
Join the South Carolina Community and we come together virtually to connect, empower, and learn from experts in the fields of bleeding disorders and lived experienced experts” (LEEs).
HANDI Highlights: Rare & Ultra Rare Bleeding Disorders Resources
HANDI Highlights is a periodic communication linking the inherited bleeding disorders community to resources that reflect information request trends of the HANDI Resource Center.
NBDF Wednesday Webinar: Untold Journeys: A Glimpse into Ultra-Rare Bleeding Disorders
Explore the remarkable narratives of the ultra-rare bleeding disorders community and gain a deeper understanding of the pivotal role advocacy plays in their journeys, especially in overcoming significant challenges. Our panel, hailing from diverse backgrounds and diagnoses, will illuminate their experiences, offering valuable insights into resilience and determination.
Inherited Platelet Disorders (Bernard-Soulier Syndrome, Glanzmann’s Thrombasthenia, Platelet Storage Pool Disease, Immune thrombocytopenia)
There are many different types of bleeding disorders, and they can affect people in different ways. The National Bleeding Disorders Foundation provides support and education for all different types of bleeding disorders. Check out the information that they provide on inherited platelet disorders.
Link: https://www.bleeding.org/bleeding-disorders-a-z/types/inherited-platelet-disorders
Glanzmann’s Thrombasthenia and Bernard-Soulier Syndrome
Most bleeding disorders are relatively rare. Even the most common bleeding disorder, von Willebrand disease, affects just 1 out of every 100 people. But others are much rarer, such as the platelet disorders known as Glanzmann’s thrombasthenia and Bernard-Soulier syndrome.
Both of these disorders affect about 1 in 1 million people and are autosomal recessive disorders, which means that two copies of an abnormal gene (one from each parent) must be present for the disease or trait to develop. They both affect men and women equally.
Link: https://hemaware.org/bleeding-disorders-z/glanzmanns-thrombasthenia-and-bernard-soulier-syndrome
The National Bleeding Disorders Foundation provides support and education for all different types of bleeding disorders. Check out the information that they provide on rare factor deficiencies.
Link: https://www.bleeding.org/bleeding-disorders-a-z/types/other-factor-deficiencies
ITP Conference
More than 160 attendees, from 10 countries and 25 states, traveled to Seattle, Washington for the invaluable opportunity to, once again, gather as a community, reconnect with and learn from one another, and reap the natural benefits of this shared experience. A robust agenda of both large and small group sessions featured PDSA’s Medical Advisors and other medical professionals and offered our attendees a wealth of information. Check back for future conference dates.
Bleeding Disorders Association of South Carolina is a 501(c)3 non-profit organization and a chapter of the National Bleeding Disorders Foundation and a member organization of Hemophilia Federation of America.
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