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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.
Support Group Educational Dinner
February 23, 6:30pm
Saluda’s Restaurant, 751 Saluda Ave, Columbia, SC 29205

Join us for our community Engagement Dinner event as we Celebrate RARE DISEASE DAY!

Resilience

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.

RARE DISORDERS GENERAL RESOURCES:
Rare Coagulation Disorders Resource Center

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.

Link: http://www.rarecoagulationdisorders.org/

Rare Bleeding Disorders (Factor 7, 10,13, Glanzmann’s Thrombasthenia)

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 RESOURCES:

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

HFM: National Conference for Women and Teens with Hemophilia and Rare 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 DEFICIENCIES RESOURCES:

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

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