Making the World of ITP a more manageable place to be! 

OUR MISSION: The Platelet Disorder Support Association is dedicated to enhancing the lives of people with immune thrombocytopenia (ITP) and other platelet disorders through education, advocacy, research and support.

A diagnosis of immune thrombocytopenia (ITP) leaves patients, caregivers and loved ones frightened, confused, angry and feeling alone. Medical professionals not accustomed to treating ITP patients often times become perplexed and frustrated in treating the disease. There is NO CURE for ITP so proper management of the symptoms that can abruptly rob an individual from his or her life is crucial. PDSA is the premier ITP education and support resource for all individuals involved in the treatment, management and life with ITP. 

PDSA is a 501 (c)3 organization. Contributions are tax deductible to the extent of the law. PDSA is eligible for corporate matching programs. PDSA receives NO federal funding.

EDUCATION 

Website 

PDSA.org contains more than 200 pages of FREE information, featuring the most current ITP research and news. Each month, PDSA.org receives 50,000 unique visitors per month from 130 countries. 

Patient Booklets & Articles 

• 29 informational booklets (including Spanish, French, Finnish, & Chinese versions)
• Partnership with Health Monitor Network producing the patient Guide to ITP distributed to medical institutions and hematology offices across the U.S.
• Numerous Medical Articles 

All booklets are distributed free at local support group meetings, medical meetings and conferences, are available by mail and downloadable at PDSA.org. 

Newsletter 

PDSA’s quarterly newsletter The Platelet News is a comprehensive publication for PDSA members with the latest research and recommendations for treatment and improved health for ITP patients. The newsletter’s 28 pages include reports from our annual meeting, advocacy meetings and annual hematology conferences and provides updates on PDSA support groups around the U.S. and in Canada, and shares fundraising news, patients stories, and other pertinent news. 

E-News 

PDSA’s complimentary online newsletter is distributed to more than 17,000 constituents each month and features the most current ITP research, general health information and provides resources to patients, families and medical professionals. 

Annual Meeting

Each year, PDSA hosts the three day national ITP Conference featuring the latest information and research on ITP. For many ITP patients, this is the first time they are able to meet others with the disease and speak with the world’s top researchers and medical experts on immune thrombocytopenia. 

RESEARCH

ITP Natural History Study Registry 

The ITP Natural History Study Registry is an international patient-consented registry of individuals with ITP. The registry aims to collect data on the natural progression of ITP, enabling PDSA to gather data on diagnosis and treatment, management of care, quality of life, and clinician reporting. The registry is administered by PDSA and overseen by NORD and a committee of leading hematologists, ITP patients, and caregivers.

Research Program

The Research Program was established to fund, assist and encourage research in the treatment of ITP and other platelet disorders.  In 2016, PDSA established Research Guidelines with the goal of funding the most promising research projects to further understand the pathogenesis and management of primary ITP, have the potential to raise the quality of life for ITP patients, and lead to new therapies and a cure.

SUPPORT

The ITP Network: Building Strength through Support. Advancing Advocacy through Education.

PDSA’s ITP Support Network is a volunteer-driven movement focused on empowering ITP patients through education, support and dedication to raising public awareness for the most common autoimmune bleeding disorder unknown to most.
ITP affects 10 times as many people as hemophilia.

Support Groups

• 40 local support groups (including 2 in Canada & 1 in New Zealand)
• 1 Teleconference Support Group for Parents of Children with ITP
• 1 Teleconference Support Group for Canadian Patients and Loved Ones 

Support Group Facilitator Workshop

Yearly training offered at ITP Conference to current facilitators and those interested in starting a group. 

Online Discussion Group and Chat Room

Available to adults with ITP, teens with ITP, parents of children with ITP, and ITP and pregnancy with 7,600+ members. 

Social Networking

• 15,000+ Facebook likes & friends
• 390+ Instagram followers
• 1000+ Twitter followers
• 70,000+ YouTube & Vimeo video views

Patient Support and Referral Service

Trained staff answer more than 5,000 calls/emails each year, providing information on ITP and available treatments, and offering assistance in locating a hematologist. 

Audi Gerstein College Scholarship

PDSA’s Audi Gerstein College Scholarship Program provides financial assistance to senior high school students, college students or adults interested in continuing education who are suffering from ITP or a similar inherited or non-inherited platelet disorder. 

Poke-R Club for Kids with ITP

Clinical support programs for children in hematology/oncology units are primarily designed for children with cancer or other bleeding disorders. The ITP POKE~R CLUB program was developed to empower children with ITP by alleviating the fears and anxieties associated with treatments, needlephobias and managing the disease.

PDSA's research poster "ITP Poke-R Club: A Clinical Support Program Bringing Comfort and Support to Kids Coping with Immune Thrombocytopenia" detailing the efficacy and impact of the program on pediatric ITP patients was presented to over 600 rare disease stakeholders at the National Organization of Rare Disorders (NORD) Rare Diseases & Orphan Products Breakthrough Summit 2016 and was selected as one of the top 3 abstracts out of 40.

The Poke-R Club program is available to PDSA members in the U.S. and Canada.

View our most recent Annual Report here 

Visit PDSA.org for a complete look at how we help make the World of ITP a more manageable place to be!