Thanks to efforts to raise awareness and advocate for the ITP community, change is having far-reaching impact for the rare bleeding disorder that would have been seen as impossible just 20 years ago. At PDSA, we’re dedicated to supporting ongoing awareness and advocacy by encouraging a growing community of ITP Ambassadors for change.
PDSA community champion Congressman Darin LaHood recognizes ITP Awareness Month and shares information on how YOU can make a difference in the lives of ITP patients!
Advocacy in Action
Back-to-back advocacy days for PDSA in May 2025! In the U.S., ITP Hill Day brought together 30 patients, caregivers, PDSA Medical Advisors and staff to meet with 34 congressional offices on Capitol Hill to bring awareness to ITP and the need for ITP Centers of Excellence. In Canada, Queen's Park Day hosted 9 patients, caregivers and PDSA staff to meet with 12 Members of Provincial Parliament (MPPs) and Ministers to discuss better access to ITP treatments. Every conversation with a policymaker is a step toward better care. By sharing your journey, you help ensure that no one with ITP feels unheard or unseen. When you speak up, you spark change—not just for yourself, but for the entire ITP community. Your voice is powerful, and together, we can shape a future with better care and greater awareness.
Wonder what it's like to attend an advocacy day?
Follow ITP patient and PDSA staff member, Melissa Hilsabeck, as she attends ITP Hill Day!
You can become an ITP Ambassador through…
PDSA Support Groups
Although a diagnosis of ITP is rare, you’re not alone. PDSA Support Groups across the United States and Canada are there for anyone looking for support in coping with ITP. No group in your area? Contact PDSA’s Programs & Events Manager, Jody Shy at jshy@pdsa.org. Or, contact PDSA, pdsa@pdsa.org, (440) 746-9003 for information on how you can become an Ambassador of Hope and start a local group today.
ITP Awareness Events
September is all about ITP! Each September, we celebrate the courage of ITP Warriors during ITP Awareness MonthSM and Sport Purple for Platelets DaySM on the last Friday of September. From organizing a Sport Purple day or dress down event at work or school, the sky is the limit on ways to raise awareness and fundraise throughout the month. Explore how you can become an Awareness Ambassador or create your own online fundraising page today!
Advocacy
Advocacy (speaking in favor of a cause, idea, or policy) helps build awareness and support for ITP and other platelet disorders. Anyone interested in having more people know about ITP, having greater access to treatment and getting more funding for ITP and related diseases can help.
Changing public policy, having national and state governments enact laws and fund directions that benefit our cause can take much time and effort. PDSA has been working with like-minded organizations and related government agencies for years to bring awareness and enact changes—and our work continues and grows.
- Every call, every letter, every meeting can help our advocacy efforts. You can be an Ambassador of Change by:
- Attending meetings, writing letters, signing petitions
- Attending marches, rallies and political fundraisers
- Educating yourself through seminars and symposia
- Telling your story to reporters and other media
- Participating in surveys and registries to help researchers gather data to support your position
Advocacy begins with listening to those who live with ITP every day. At the first EL-PFDD meeting in 2019, patients and caregivers shared with the FDA and industry leaders how ITP impacts their quality of life and what they expect from future treatments. Explore Voice of the Patient to see how these insights guide our advocacy efforts—and how you can add your voice.
US Government Contacts
Outside of the U.S.?
You can help too. Contact your local and national government. ITP is everywhere.
PDSA Advocacy Programs
- Healthcare Access
- Blood Safety
- Autoimmune Awareness
- Rare Disease Awareness
- US Government Agency Connections
