Platelet Disorder Support Association

What Platelet Disorder Support Association does

The Platelet Disorder Support Association (PDSA) is a 501(c)(3) nonprofit organization founded in 1997 and headquartered in Cleveland, Ohio, that serves patients, families, and caregivers affected by immune thrombocytopenia (ITP) and other platelet disorders. Its mission is operationalized across four pillars — education, advocacy, research funding, and patient/family support — delivered primarily through a digital platform at pdsa.org and supplemented by in-person programming. Primary audiences are adult and pediatric ITP patients, parents and caregivers, pregnant women with ITP, and healthcare professionals (notably hematologists). The organization also maintains a Canadian presence (PDSA Canada).

PDSA's product and technology footprint centers on an international patient-consented registry (the ITP Natural History Study Registry) that aggregates diagnostic, treatment, management, and quality-of-life data, paired with the validated 44-item ITP Patient Assessment Questionnaire (ITP-PAQ) developed with Amgen. Content assets include free multilingual educational booklets, the monthly e-Newsletter, the quarterly The Platelet News, and the 'Bruised but Not Broken: Living with ITP' podcast. Patient-utility products include a Doctor Finder Tool, clinical trial listings, local support groups, the ITP Poke-R Club, the annual ITP Conference (next: Salt Lake City, July 24-26, 2026), and ITP Walk events. Research funding is institutionalized through the Barbara and Peter T. Pruitt Jr. ITP Research Award (two $20,000 grants annually) and the James B. Bussel, MD ITP Young Investigator Award ($10,000). Proprietary technology is limited to the registry platform; no AI/ML capabilities are disclosed.

PDSA operates as a tax-exempt nonprofit funded through four revenue streams: (1) annual membership dues providing access to exclusive content and The Platelet News, (2) tax-deductible donations from individuals and families, (3) pharmaceutical sponsorships from Amgen and Sobi underwriting the website and programs, and (4) sales of patient-created medical alert jewelry and awareness items via the Platelet Store. Go-to-market is community-led: PDSA reaches patients via support groups, the ITP Poke-R Club, peer warrior stories, and ITP Walk events, with multi-channel marketing across website, email, social (Facebook, Instagram, X, YouTube, LinkedIn), podcast, and the annual conference. Organizational credentials include a 4-star Charity Navigator rating and active NORD membership. Revenue figures are not publicly disclosed; the organization operates with 1–10 employees.

Name

Platelet Disorder Support Association

Legal name

Platelet Disorder Support Association

Website

https://pdsa.org

Company type

Private

Founded year

1997

Operating status

Operating

Headcount range

1–10 employees

Short description

The Platelet Disorder Support Association is a 501(c)(3) nonprofit founded in 1997 that supports adults, children, and families affected by immune thrombocytopenia (ITP) through education, advocacy, research funding, an international patient registry, and community programs.

Ownership category

akta.pro rank

Headquarters

HQ city

Cleveland

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Membership Dues: Annual membership fees providing exclusive content and access to the PDSA community, including The Platelet News newsletter.
2. Donations and Charitable Contributions: Tax-deductible donations from individuals, families, and supporters to support PDSA's mission of education, advocacy, research, and support.
3. Pharmaceutical Sponsorships: Funding and support from pharmaceutical companies including Amgen and Sobi who sponsor the PDSA website and programs.
4. Platelet Store Sales: Sales of patient-created ITP medical alert jewelry and awareness items through the Platelet Store.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels7 records

Core offering

PDSA is a 501(c)(3) nonprofit organization that educates, advocates for, and supports patients with immune thrombocytopenia (ITP) and other platelet disorders through an integrated portfolio of resources. Core offerings include the international ITP Natural History Study Registry, an annual ITP Conference, the Doctor Finder Tool, the ITP Poke-R Club community, free multilingual educational booklets, the "Bruised but Not Broken" podcast, monthly e-Newsletter, quarterly The Platelet News, the Platelet Store of medical alert items, local support groups, clinical trial listings, and funded research grants.

Product overview

The Platelet Disorder Support Association (PDSA) operates as a non-profit patient advocacy organization offering a comprehensive suite of educational, supportive, and research-focused resources for ITP (Immune Thrombocytopenia) patients and their families. The organization provides an annual ITP Conference, a Doctor Finder Tool, the ITP Natural History Study Registry, educational booklets in multiple languages, the 'Bruised but Not Broken' podcast, monthly e-Newsletter, quarterly The Platelet News publication, The Platelet Store for medical alert items, Clinical Trials listings, local Support Groups, and funds research through the Barbara and Peter T. Pruitt Jr. ITP Research Award and James B. Bussel MD ITP Young Investigator Award. The portfolio also includes the ITP-PAQ, a validated quality-of-life assessment tool developed with Amgen.

Differentiator

Problem solved

Functional benefit

Products and services

• ITP Natural History Study Registry An international patient-consented registry collecting data on the natural progression of ITP, including diagnosis, treatment, management of care, quality of life, clinician reporting, and population characterization. It is for ITP patients, caregivers, and researchers seeking to advance understanding of the disease.
• Doctor Finder Tool A searchable tool that helps ITP patients find hematologists specializing in ITP care near their location. It is for newly diagnosed and existing patients seeking appropriate specialist care.
• ITP Conference (Annual) An annual multi-day conference bringing together ITP patients, families, and healthcare professionals for education, peer support, and research updates. It is for ITP patients, caregivers, and clinicians seeking community and clinical knowledge.
• ITP Patient Assessment Questionnaire (ITP-PAQ) A 44-item validated questionnaire that assesses health-related quality of life in adult ITP subjects across physical health, emotional health, overall QoL, social activity, women's reproductive health, and work. It is for clinicians, researchers, and clinical trial sponsors evaluating ITP patient outcomes.
• Barbara and Peter T. Pruitt Jr. ITP Research Award An annual research grant program awarding two $20,000 grants to investigators conducting innovative patient-centered ITP research. It is for academic and clinical investigators seeking funding for ITP research.
• James B. Bussel, MD ITP Young Investigator Award A $10,000 scholarship award that supports excellence in academic ITP research for students with exceptional promise. It is for emerging investigators in hematology and ITP-focused academic research.
• The Platelet Store An online storefront selling patient-created ITP medical alert jewelry and awareness items. It is for ITP patients and supporters who want to identify their condition and raise awareness.
• PDSA Annual Membership An annual membership program that provides exclusive content and access to the PDSA community, including The Platelet News newsletter. It is for ITP patients, families, caregivers, and supporters who want ongoing community affiliation.

Quantifiable outcome

• International patient-consented registry established to track natural progression of ITP
• +2 more outcomes

Named customers4 records

Segments5 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature2 records

Partnerships

Four partnerships are on record, tiered core and major.

• National Organization for Rare Disorders (NORD)coreStrategic or Co-development PartnerPDSA is an active member of NORD, the leading independent organization representing the 25-30 million Americans with rare diseases. This membership provides access to resources, advocacy support, and collaboration opportunities in the rare disease community.
• The Hematology Society of North America (THSNA)majorStrategic or Co-development PartnerTHSNA membership supports collaboration in hematology education and research initiatives relevant to platelet disorders and ITP.
• International AlliancemajorStrategic or Co-development PartnerInternational Alliance partnership expanding PDSA's global reach and collaboration in platelet disorder awareness and support.
• Foundation for Women & Girls with Blood DisordersmajorStrategic or Co-development PartnerPartnership focused on supporting women and girls affected by platelet disorders and blood conditions, including pregnant women with ITP.

Scale indicators3 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella advocacy organization representing the 25–30 million Americans with rare diseases. PDSA is itself a NORD member; NORD operates as the broader incumbent across rare-disease advocacy, policy, and research infrastructure rather than competing directly with PDSA on ITP-specific services.
• The Leukemia & Lymphoma Society: Largest US nonprofit dedicated to blood cancers, with patient support, research funding, and policy advocacy. Overlaps with PDSA in hematology patient-education and research-grant programs, but operates at substantially greater scale and broader disease scope.

Direct peers

• Sjögren's Foundation: Patient-advocacy organization for Sjögren's disease, a chronic autoimmune condition with similar small-staff, community-and-education-driven operating model. Comparable to PDSA in structure, mission (patient empowerment for a chronic rare condition), and reliance on donations and pharma support.
• National Hemophilia Foundation: US patient-advocacy organization serving people with hemophilia and other bleeding disorders. Comparable to PDSA in operating model: education, community support, research funding, and pharma-sponsored programs for a rare hematologic condition.
• Cooley's Anemia Foundation: Patient-advocacy organization for thalassemia (Cooley's anemia), another rare hematologic condition. Operates with a similar niche-disease model — patient community, education, research grants, and pharma-sponsored programs — directly comparable to PDSA in scale and structure.
• Aplastic Anemia & MDS International Foundation: Patient advocacy and support organization for aplastic anemia, myelodysplastic syndromes, and related bone-marrow failure diseases. Closely mirrors PDSA's combination of patient education, peer support, research grants, and pharma partnership for a rare hematologic condition.
• Sickle Cell Disease Association of America: National patient-advocacy organization serving individuals with sickle cell disease, another rare hematologic disorder. PDSA's structure (registry, education, advocacy, pharma partners, regional chapters) closely parallels SCDAA's operating model.
• Immune Deficiency Foundation: US patient organization for people with primary immunodeficiency diseases. Operates with a similar rare-disease advocacy model — patient education, community programs, research funding, and pharma-aligned partnerships — directly comparable in scope and operating motion to PDSA.
• MPN Research Foundation: Patient-driven research and advocacy foundation for myeloproliferative neoplasms. Comparable to PDSA in combining patient education, research funding, and pharma-aligned programming for a rare hematologic malignancy.
• Foundation for Women & Girls with Blood Disorders: PDSA's existing strategic partner organization focused on women and girls affected by blood disorders, including pregnant women with ITP. Directly comparable in mission overlap, target segments (women with bleeding disorders), and patient-education model.

Market position

Strengths4 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/PDSA_ITP
• YouTubeyoutube.com/user/PDSAorg
• Facebookfacebook.com/plateletdisorder
• LinkedInlinkedin.com/company/platelet-disorder-support-association---pdsa
• Instagraminstagram.com/pdsa_itp

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Platelet Disorder Support Association