PLATINUM2024

Platelet Disorder Support Association, Inc.

Empowering ITP Patients

aka PDSA   |   Cleveland, OH   |  www.pdsa.org

Mission

The Platelet Disorder Support Association is dedicated to assisting patients with immune thrombocytopenia and other platelet disorders through education, advocacy, and research.

Ruling year info

1999

President & CEO

Ms. Caroline Kruse

Main address

8751 Brecksville Road, Suite 150

Cleveland, OH 44141 USA

Show more contact info

EIN

22-3611011

NTEE code info

Alliance/Advocacy Organizations (G01)

Health (General and Financing) (E80)

Specifically Named Diseases (G80)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

For many immune thrombocytopenia (ITP) patients and their families this disease is a roller coaster ride of emotions including feelings of helplessness, anxiety, fear, and depression. People with ITP face a complex set of challenges and this autoimmune bleeding disorder can have a huge impact on the day-to-day physical and psychological aspects of a person's life

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Patient Education

Provides on-line and printed information that enhances patients’ knowledge of the disease, treatments, and wellness practices.

Investigate and report the most recent research findings and treatment recommendations.

Patient Support promotes patient-to-patient, patient-to-physician, and patient-to-medical provider communication.

Encourage patient involvement in treatment and life-style decisions.

Public Education through contacts with the media and the publication of educational materials, increase the amount of information presented and available about ITP and other platelet disorders.

Platelet Disorder Research and Advocacy assists and encourages research in the treatment of ITP and other platelet disorders through surveys and collaboration with the National Institutes of Health, physicians, and researchers.

Programs reach more than 14,000 people world-wide and more through our web sites.

Population(s) Served
People with diseases and illnesses

Where we work

Awards

Abbey S. Meyers Leadership Award 2019

NORD

Affiliations & memberships

NORD 2020

THSNA 2020

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of support groups offered

This metric is no longer tracked.
Totals By Year
Related Program

Patient Education

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of Children enrolled in ITP Poke-R-Club

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Designed to ease the fear of injections or "needle phobia" resulting from frequent blood draws and treatments.

Number of educational booklets on ITP offered in English and translations.

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Translations into other languages has expanded from 5 in 2017 to 13 in 2023.

Number of ITP international alliance members

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The alliance has grown from 26 member countries in 2017 to 33 member countries in 2023.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

Patient Education
- We provide on-line information and printed material to enhance knowledge about the disease/disorders related to platelets, treatments, and wellness practices. We investigate and report the most recent research findings and treatment recommendations.
Support Services
- Services promote patient-to-patient, patient-to-physician, and patient-to-medical provider communication. PDSA is also able to refer patients to local ITP medical professionals who can provide services to assist them with their treatment.
Public & Medical Education
- PDSA has become a source of information for busy medical professionals. It wants to continue to expand that role to nurses and other health professionals with new initiatives and targeted events. Its database of over 20,000 records allows us to communicate with the patient, the medical community, and public constituents through print material and e-mail.
Advocacy & Research
- PDSA stimulates and leverages research that will lead to new developments in the treatment of ITP and other platelet disorders. It believes that the profile and public understanding of platelet issues must be improved. It continues building its research fund and work with its medical advisors to delve into the causes of ITP and conduct smaller studies that could have an impact on the quality of life for an ITP patient.

We support and empower our patients through the following:
PDSA website:
- contains over 200 pages of free information, support and resources serving more than 50,000 unique monthly visitors from more than 130 Countries
Patient and Public Education
- 29 educational booklets available online and in print in multiple languages and numerous articles
Publications
- 2 quarterly and 1 monthly newsletter reporting current research findings, treatment updates, and healthy living tips
ITP Poke-R-Club
- Clinical support program developed to empower kids with ITP to overcome the trials associated with managing life with ITP
PDSA College Scholarship
- Financial assistance to senior high school students, college students or adults interested in continuing education who are living with ITP or a similar inherited or non-inherited platelet disorder.
Local and Teleconference Support Groups
- 43 local groups including the US, Canada, and New Zealand, and 2 groups via video conference
ITP Conference
- Annual patient-centered educational meeting drawing hundreds of community members together to discover current disease data, speak with top ITP specialists, share journeys and build a network of support
Patient Call and Referral Service
- Phone/email support service answering 5,000 calls each year
Awareness Month
- PDSA received the designation for National ITP Awareness Month in 2010. Each September, we celebrate with activities throughout the month, with the last Friday of September as Sport Purple for Platelets Day, and the last week of September as Global ITP Awareness Week.
National Walk/Run and DIY Fundraising Events
- Unite patients and communities, raise public awareness, provide essential funding to support life-changing programs and groundbreaking research, and foster hope in the quest to heal.
Social Media Networks
- PDSA's Facebook page and closed group, Instagram page, Twitter channel, YouTube channel, and the PDSA.org Discussion Forum are treasured communities for connecting online and widening the circle of awareness.
ITP Natural History Study Registry
- International patient-consented registry of individuals with ITP designed to gather data on the natural progression of ITP, diagnosis and treatment, management of care, quality of life, and clinician reporting.
Research Program
- Funds, assists and encourages promising research with the potential to further understand the pathogenesis and management of primary ITP, raise the quality of life for patients, lead to new therapies, and find a cure.

PDSA was the recipient of two prominent awards that will enhance our understanding of ITP, improve patient quality of life, and lead to the development of better treatments and possibly a cure one day.

In 2016 PDSA was the recipient of the Eugene Washington PCORI Engagement Award from the Patient-Centered Outcomes Research Institute, which provides essential funding to assist PDSA in the development of our Framework and Priorities Guidelines for supporting ITP research projects. To further our efforts surrounding research, we established a Patient Advisory Committee to ensure that the ITP patient perspective and voice are at the center of our research priorities.

Equally impactful is PDSA's selection by the National Organization for Rare Disorders (NORD) to participate in the NORD Natural History Study Registry Project, a cooperative agreement with the U.S. Food and Drug Administration (FDA). Designed to capture data on the natural progression of ITP, this transformative patient registry project enables PDSA to collect data on diagnosis and treatment, management of care, quality of life, and clinician reporting.

Another exciting initiative spearheaded by PDSA was the founding of the International ITP Alliance, an intercontinental partnership of ITP patient support organizations committed to education, awareness and establishing a global voice for ITP patients. Through the creation of the website, www.globalitp.org and Global ITP Awareness Week, we made great strides in raising awareness for ITP around the world.

Since 2017 at least two $20,000 grants have been awarded annually to investigators conducting innovative ITP patient-centered research, The Barbara and Peter T. Pruitt Jr. ITP Research Award is named in honor of two generous friends and the largest single donors in the history of PDSA: Barbara Pruitt, ITP patient since age four, dedicated volunteer and passionate patient advocate and Peter Pruitt, devoted caregiver and supporter serving as PDSA’s Board Chair for over a decade.8 PDSA. Also in 2017, the PDSA Board of Directors established The James B. Bussel, MD ITP Young Investigator Award to honor Dr. Bussel for all that he has done and continues to do to make a difference in the lives of ITP patients, their families, and his contributions to mentoring and advancing the scientific careers of promising clinical investigators. The James B. Bussel, MD, ITP Young Investigator Award is competitively awarded to support excellence in academic ITP research by providing a selected student deemed to be of exceptional promise and a highly meritorious project with a $10,000 scholarship award funded by PDSA.

Further, since 2009 The PDSA College Scholarship Program has provided 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 in the United States and Canada.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To inform the development of new programs/projects, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We aim to collect feedback from as many people we serve as possible, We act on the feedback we receive

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

Platelet Disorder Support Association, Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Platelet Disorder Support Association, Inc.

Board of directors
as of 01/19/2024
SOURCE: Self-reported by organization
Board co-chair

Mr. Peter Pruitt


Board co-chair

Mr. Dale Paynter

Peter Pruitt

Karen Avrick

Kim Everett

Dale Paynter

Linda McGuirl

Robert Feiner

Melissa Hilsabeck

Derek Zimmerman

Bruce Prescott

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Not applicable
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 1/19/2024

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 10/15/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.