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Ultra Rare Bleeding Disorders & Platelet Disorders Support

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:

Empower and equip individuals and their families with knowledge and support by learning from others with shared practical knowledge from personal experiences in a safe, warm, and inviting atmosphere activity.
Helping to facilitate conversations on issues relating to being affected by rare bleeding disorders and working within the group to find practical solutions for their everyday life situations.
Gain knowledge from participants and guest speakers about living with rare bleeding disorders and how to manage this bleeding disorder in particular ways.
Empower individuals and their families to obtain the best medical care and supportive services and resources.
Build bonding relationships for future advocacy needs, support, and friendships.
Help to facilitate and increase knowledge and awareness about the symptoms and treatment of rare bleeding disorders and share ways to encourage more awareness to the general public and healthcare professionals.

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 Hemophilia 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.hemophilia.org/bleeding-disorders-a-z/types/inherited-platelet-disorders

ITP

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.

Link: https://pdsa.org/conferences.html

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Ultra Rare Bleeding Disorders & Platelet Disorders Support

ITP

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