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.
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!
Join or renew your PDSA membership today
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 Lifestyle, 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.
Library of Free Booklets and Their Translations
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.
