In 1998, an online forum, itppeople.com, was created by an ITP patient as a space for fellow patients to share with one another and gain important insight and knowledge on living with the rare bleeding disorder, immune thrombocytopenia. Growing interest demonstrated a clear demand for such a resource for this patient population. And in no time, this grassroots discussion group would blossom into the Platelet Disorder Support Association (PDSA). Today, 25 years later, PDSA is recognized as North America’s premier advocacy organization for those living with ITP and other platelet disorders. Through its mission, PDSA continues to lead the way for this patient community – serving tens of thousands of patients and caregivers, and collaborating with a growing number of clinicians and researchers each year through focused efforts in education, advocacy, research, and support.
Timeline of the Highlights and Milestones We’ve Achieved Since 1998
We look forward to sharing in our silver anniversary celebration with you throughout the coming year – and we are pleased to start with the following timeline:
THEN and NOW - Celebrating 25 Years of Serving the ITP Community
PDSA’s 25th anniversary is a special milestone! We’ve come a long way – and are pleased to spotlight how the world of ITP and PDSA have changed since we were founded in 1998.
ITP Natural History Study Patient Registry
THEN: In 2017, PDSA launched the very first ITP Natural History Study Patient Registry on February 28, Rare Disease Day. The ITP Registry is an international patient-consented registry of adults and children with ITP that aims to collect, store, and retrieve data on the natural progression of ITP, enabling collection of data on diagnosis and treatment, management of care, quality of life, clinician reporting, and characterization of the ITP population as a whole. The ITP Registry initially offered five questionnaires. Within 24 hours of launch, 226 patients had enrolled.
NOW: Today, more than 2,200 ITP patients have stepped forward to participate in the ITP Registry and report the details of their ITP journey. PDSA has continued to expand its collection of questionnaires on pressing topics to the ITP patient community (such as the COVID-19 & ITP survey) and is building toward a total of 13 patient surveys. PDSA recently unveiled its latest survey, Bleeding and Hospitalization.
Your active participation in the ITP Registry is needed. BE THE KEY TO UNLOCK THE MYSTERIES OF ITP! To learn more, enroll, or return to start/complete a survey, visit pdsa.org/registry.
POKE-R Club Pediatric Support Program
THEN: Years ago, families regularly reported on the challenges and fear of injections, or "needle phobia," their children with ITP faced when going to the doctor or clinic for blood draws and treatments. PDSA set out to improve the experience for these young patients and, in 2014, created the POKE-R Club. The POKE-R Club addresses and eases the fears of pediatric ITP patients through a positive reward, distraction, and pain management program. Enrolled POKE-R Club members track and report their needle pokes to PDSA to receive special prizes and awards. Each member also receives specially designed distraction cards for doctor visits and a Buzzy Bee® relief device to make injections and blood draws more manageable! In its first year, 12 U.S. pediatric patients with ITP were enrolled in the program.
NOW: Today, the PDSA POKE-R Club pediatric support program remains an exclusive free benefit of PDSA membership in both the United States and Canada. And participation in the Club has grown exponentially to include 171 children and adolescents, ranging from two to 18 years of age!
PUMP IT UP FOR PLATELETS! THEN: PDSA first launched the Pump It Up For Platelets! national walk/run program in 2011 as a fun and engaging way to build community and raise awareness and funding for the ITP community. That year, our first walk/run events attracted over 500 participants and donors and raised over $48,000 for PDSA’s patient-centered resources and support programming.
PUMP IT UP FOR PLATELETS! NOW: The Pump It Up For Platelets! program has expanded beyond just walk/run events to include other creative awareness and fundraising events for PDSA and the ITP community, such as bowling fundraisers, large bake sales, barn parties, and special yoga classes. In 2022, 17 Pump It Up For Platelets! awareness and fundraising events were held across the US and Canada, with over 800 participants and donors coming together to raise more than $237,000. In honor of our 25th anniversary year, PDSA aims to increase the number of awareness and fundraising events to 25 in 2023!
ITP CONFERENCE THEN: In June 2001, PDSA hosted the very first ITP Conference in Bethesda, Maryland. The one-day event, featuring presentations by PDSA founding Medical Advisors and other experts in the field, attracted an audience of 200+ attendees and demonstrated the clear need for and interest in this type of gathering for the ITP community.
ITP CONFERENCE NOW: Today, the ITP Conference is recognized as the premiere patient conference and is often described as a life-changing experience by those who attend. In its 23rd year, ITP Conference has grown considerably – in its expanded programming and session offerings, the number of patients and caregivers who attend, the quantity of PDSA Medical Advisors and ITP experts who present, and the active engagement of industry partners who support it. With nearly 300 attendees, ITP Conference 2023 in Chicago, Illinois, was our second-largest conference to date! We look forward to the continued growth of this impactful event.
PDSA ONLINE THEN: In 1998, an online forum, itppeople.com, was created by an ITP patient (Joan Young) as a space for fellow patients to share with one another and gain important insight and knowledge on living with the rare bleeding disorder, immune thrombocytopenia. In 2000, PDSA.org was created to serve as an expanded online resource for the ITP patient community, including a budding discussion group.
PDSA ONLINE NOW: Today, PDSA.org is home to the most comprehensive collection of resources in the world on ITP for patients and health care professionals, including 225+ pages of disease information, educational materials, treatment guidelines, signature patient programs, and research designed to inform, serve, and support the greater ITP community. Our website receives nearly 700,000 visits each year and stands as the leading hub of information on ITP.
THE INTERNATIONAL ITP ALLIANCE THEN: In 2015, PDSA helped cofound and establish the International ITP Alliance and website globalitp.org to build global awareness of this rare bleeding disorder and to support the collective global ITP patient voice.
THE INTERNATIONAL ITP ALLIANCE NOW: Today, with PDSA’s support and guidance, the International ITP Alliance has developed a strong global presence with 33 representative patient associations in 29 countries.
THE PLATELET NEWS THEN: In 1999, PDSA published its very first issue of The Platelet News as a valuable resource for PDSA members. This 8-page newsletter, featuring a collection of helpful articles, recipes, and tips to help patients navigate their ITP journey, was distributed quarterly.
THE PLATELET NEWS NOW: Today, The Platelet News remains an exclusive benefit of PDSA membership. And just as our organization and efforts on behalf of the ITP community have expanded, so has this special resource. Still distributed quarterly, The Platelet News is now a 28-page newsletter featuring ITP patient/caregiver cover stories and packed with curated content on the latest in ITP research, scientific meetings, treatment options, and PDSA educational resources, as well as updates and highlights on PDSA’s signature ITP patient programs, support services, awareness activities, and advocacy efforts.
Don’t miss your chance to benefit from this valuable member resource!
EDUCATIONAL PATIENT RESOURCES THEN: Back in 1998, there weren’t many helpful resources for those living with immune thrombocytopenia (ITP). Therefore, patients were left to manage this frightening diagnosis with little to go on, relying only on their attending physicians and what little information could be found online. Advocating for oneself was particularly challenging with the considerable lack of information on this rare bleeding disorder.
EDUCATIONAL PATIENT RESOURCES NOW: Today, ITP patients have a primary educational resource in PDSA. Committed to developing an informed and engaged patient community, we offer a wealth of information to help patients and caregivers navigate the ITP journey. Our website, pdsa.org, presents 200+ pages of the most current and comprehensive information available on ITP – including our library of free, downloadable educational booklets and fact sheets.
These educational materials have been created to help you better understand and manage your diagnosis. From individual booklets on ITP in Children, ITP in Teens, and ITP in Adults to The Role and Function of Platelets in ITP, ITP and the Female Lifecycle, and Health Insurance & Assistance Programs for ITP Patients, we’ve got you covered! Our collection includes 12 helpful publications produced in English, with a variety of translations available in 11 different languages.
ITP TREATMENTS & THERAPIES THEN: In 1998, there were just a handful of pharmaceutical companies focused on ITP and a limited number of ITP treatments available, including corticosteroids, IVIG, WinRho®, and splenectomy.
ITP TREATMENTS & THERAPIES NOW: Today, there are more than 20 companies with approved ITP treatments or therapies on the horizon in various phases of research and development.
In just 25 years' time, the ITP landscape has changed dramatically. Growth in our industry equals growth in opportunities for the ITP community.
Our awareness efforts and patient-centered programming and services are paying off as clinicians, researchers, and industry partners have become better informed on the ITP patient condition. Visit the clinical trials section of our website for information on ITP clinical trials currently enrolling patients.
SUPPORT GROUPS THEN: 2003, Cleveland, Ohio – ITP patients Barbara Hise and Caroline Kruse (now PDSA’s President and CEO) shared the same hematologist, Alan Lichtin, MD, at the Cleveland Clinic. Barbara sought another patient to talk to, someone who could understand her feelings of living with this rare, chronic condition. Dr. Lichtin suggested she reach out to Caroline. Barbara and Caroline met and instantly bonded. Recognizing the impact of their meaningful connection, Dr. Lichtin next suggested the two start a support group – an incredible idea given to just the right people! Committed to building a community among ITP patients and caregivers, Barbara and Caroline initiated the very first ITP support group in the country!
SUPPORT GROUPS NOW: Today, PDSA’s ITP Patient Connect program has grown to 62 ITP support groups in the US, Canada, and New Zealand, and is an active collection of patient-led support groups who meet to offer encouragement, share personal experiences, and learn from one another. This program served as an invaluable patient resource during the pandemic, moving to a virtual format and including PDSA Medical Advisors as guest speakers to offer timely information on the COVID-19 virus and vaccines.
In 2022 alone, PDSA and our support group facilitators held a total of 65 meetings with 1,200+ patients and caregivers participating.