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:
Join the Factor X Awareness Day Celebration on October 10th! October 10th is Factor X Awareness Day! Please join us for a virtual celebration of our Factor X community.
When is this happening?
Tuesday, October 10th, 2023 at 7pm ET!
What will be happening at the celebration?
During this special Factor X Day event, you will have a chance to connect with others who also have Factor X Deficiency and meet members of their support network. You’ll hear from people who have been affected by this condition and learn about helpful resources from the National Bleeding Disorders Foundation.
Who is invited?
This celebration is for individuals with Factor X Deficiency and their Support Network.
Link to Register: https://www.hemophilia.org/events/factor-x-day-celebration
Join us for our community Engagement Dinner event as we Celebrate RARE DISEASE DAY!
Managing stress is an important aspect of our everyday lives. This presentation will discuss some of the common causes of stress and provide some examples of how to better adapt and manage adversity. Through some interactive and fun activities, you will explore what it means to be resilient and learn some associated skills as well as tips and tools for living a healthy lifestyle.
The Rare Coagulation Disorders Resource Room, an extension of the RBDD Registry (http://eu.rbdd.org/), was developed in collaboration with the Indiana Hemophilia & Thrombosis Center (www.ihtc.org).
The Resource Room serves as a platform to promote international collaboration to increase knowledge of these very rare disorders and to improve the care of affected individuals. The international RBDD mission, under the leadership of Dr. Peyvandi, will continue to be expanded over time.
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 rare bleeding disorders.
Link: https://www.hemophilia.org/educational-programs/education/rare-bleeding-disorders
Factor Deficiencies (Factor 1,2,5,7,10,11,12,13)
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 factor deficiencies.
Link: https://www.hemophilia.org/bleeding-disorders-a-z/types/other-factor-deficiencies
Conference attendance is open to women and teens with hemophilia A and B, and rare factor deficiencies including 1, 2, 5, 7, 10, 11, and 13. (Excluding factor 5 Leiden.) Last held on October 7-9, 2022 at The Westin Detroit Metropolitan Airport.
Platelet Disorder Support Association
The Platelet Disorder Support Association was patient-founded in 1998 to educate and empower those with immune thrombocytopenia and other platelet disorders. Today, PDSA is a powerful force serving and unifying the global ITP community of patients, practitioners, caregivers, advocates and key disease stakeholders.
Visit the Platelet Disorder Support Association website by going to https://www.pdsa.org/.
Link: http://www.pdasa.org
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 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 Hemophilia Foundation and a member organization of Hemophilia Federation of America.
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