May. 20, 2019
Posted by Lisa Sencen
The Platelet Disorder Support Association (PDSA) is dedicated to enhancing the lives of people with Immune Thrombocytopenia (ITP) and other platelet disorders through education, advocacy, research and support. ITP is the most common autoimmune bleeding disorder, affecting children and adults. Patients with ITP face a complex set of physical and emotional challenges as they monitor their platelet counts, balance treatment side effects, deal with debilitating fatigue, and manage the fear and frequent reality of bleeding and relapse, often cycling through treatments for years. ITP can have a huge impact on a person’s quality of life, limiting their ability to work, go to school, travel and enjoy life. ITP patients and parents of children with ITP often feel isolated and alone.
PDSA was founded in 1998 to empower those with ITP and other platelet disorders. It was founder Joan Young’s personal struggle with ITP that compelled her to establish a resource of strength for anyone affected by the bleeding disorder. PDSA President and CEO, Caroline Kruse, a patient with two rare diseases, started the first local ITP support group in 2003. PDSA’s support group program has grown to 44 across the U.S. and Canada and the International ITP Alliance includes 31 patient advocacy organizations representing 27 countries. PDSA is now the premier ITP resource in North America with a voice resonating around the world. Each day, Caroline and her small staff of six serve the global community of patients, caregivers, practitioners, and other key disease stakeholders.
PDSA continues to stay true to its mission and is heartened by messages from the ITP community indicating that its resources and support have been invaluable and, in some cases, life-saving. ITP patients have reported that their doctor did not know about a particular treatment or would not validate the debilitating fatigue and emotional burden caused by ITP until the patient shared the PDSA newsletter to read about the latest research. A patient hospitalized with severe bleeding contacted PDSA on a holiday and one of its medical advisors called her back that day to discuss her case. This level of involvement is common practice by the 14 world-renowned scientific advisors serving on the PDSA board.
The future for patients living with ITP is very promising, with new treatments in development and researchers continuing to search for the underlying causes of ITP. Through the PDSA Research Program and ITP Natural History Study Registry, there is a vital focus on patient-centered research and quality of life, leading to education on disease symptoms, impact of treatment side effects and disease aspects that patients and caregivers feel matter most. PDSA’s online discussion group, Facebook page, annual conference, patient helpline and national walk/run event connect the global community of ITP patients and caregivers, allowing them to share knowledge, ask questions, and learn from others. Through various programs, PDSA works to ease the burden for those living with this disease, support the development of better treatments and one day find a cure.
NORD is honored to have the Platelet Disorder Support Association (PDSA) as a long-time member and to honor them tonight with the 2019 Abbey S. Meyers Leadership Award.
Join us during NORD’s annual Rare Impact Awards ceremony, presented as part
of the 2019 Living Rare, Living Stronger Patient & Family Forum in Houston, TX.