At ASPHO's 30th Annual Meeting in Montreal, we talked with Caroline Kruse, executive director of the Platelet Disorders Support Association (PDSA) which is a non-profit advocacy group focused on helping patients with immune thrombocytopenia (ITP) and other platelet disorders receive information and support for these rare diseases. As Kruse explains in this video, the organization provides information for both clinicians and patients to better manage ITP.
Some of the services that PDSA provides include:
Patient Education. They provide on-line and printed information that enhances the knowledge of the disease, treatments, and wellness practices.
Support Services. They promote patient-to-patient, patient-to-physician, and patient-to-medical provider communication.
Public Education. Through contacts with the media and the publication of educational materials, PDSA strives to increase the amount of information presented and available about ITP and other platelet disorders.
Platelet Disorder Research and Advocacy. PDSA assists and encourages research in the treatment of ITP and other platelet disorders through surveys and collaboration with the National Institutes of Health, physicians, and researchers.