named programs · 2 · from sources
What they call their work
MPD Voice Newsletter
Originally founded by Dr. Harriet Gilbert and edited by Joyce Niblack, this newsletter provided educational content about MPNs; later revived by Dr. Claire Harrison in the UK as a tribute to Niblack and Gilbert
MPN Acronyms Resource
Comprehensive glossary of MPN-related medical terms and abbreviations designed to help patients understand clinical language and test results
activities · 6 groups
What they do
-
Patient and Researcher Conferences 2 activities
- Facilitates peer and expert-led educational gatherings for MPN patients and caregiversOrganizes in-person and online educational events connecting MPN patients, caregivers, and medical experts to exchange information and experiences.
- Hosts biennial patient-doctor conferences on myeloproliferative neoplasmsOrganizes in-person patient-doctor conferences, including the biennial Joyce Niblack Memorial Conference at Mayo Clinic Scottsdale, and facilitates pre-conference gatherings and online access to recorded presentations. Co-sponsored a conference with Mayo Clinic Comprehensive Cancer Center in 2005.
-
-
Advancing Geroscience Research and Translation 1 activity
- Establishes governance structures to guide MPN initiativesFormed a Scientific Advisory Board to provide guidance on the foundation’s programs and research directions.
-
-
Cancer Peer Support & Wellness Programs 1 activity
- Operates in-person and online MPN support groupsRuns support groups for individuals diagnosed with myeloproliferative neoplasms in multiple cities across the United States, Canada, and Japan, and provides free online support groups and discussion forums for patients and their loved ones.
-
-
Rare Genetic Disease Research and Advocacy 1 activity
- Provides advocacy and promotes collaboration in the MPN scientific and patient communitiesAdvocates for MPN patients and families, promotes scientific collaboration to accelerate research, and operates MPN-NET, a global online support and education network.
-
-
Disease-Specific Clinical & Patient Education 1 activity
- Publishes and disseminates MPN patient newsletters and surveysProduces and publishes the MPD VOICE newsletter covering topics such as JAK2, myelofibrosis, conference summaries, and patient surveys on fatigue and quality of life.
-
-
Uncategorized 2 activities
- Conducts and facilitates MPN patient researchFacilitated participation of 1,179 MPN patients in an international internet-based Quality of Life Survey published in Cancer (2007), and hosts the publication of research by the MPN Quality of Life Study Group. Includes personal research efforts on MPN disorders following diagnosis.
- Distributes educational materials on MPNs for patients and physiciansProvides and compiles educational resources on myelofibrosis and other MPN-related topics, including patient-contributed information on symptoms like pruritus, and permits personal copying and sharing with physicians and family members.
-
financials · form 990EZ · fy2025
revenue
Total revenue$35K
Contributions & grants$32K91%
Program service revenue$3K9%
Investment income$280%
Other revenue—
expenses
Total expenses$102K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits—
Grants paid out—
balance sheet
Total assets$210K
Cash—
Investments—
Liabilities—
Net assets$210K
6 years on record · 2020–2025 · YoY revenue +67.2%
leadership · form 990 part vii · fy2025
Who runs it
board members · 1
- ANTJE HJERPE — DIRECTOR
relationships · 34
Who they work with
- ACOR Partner — Hosts the MPN-NET support group mailing list.
- ACOR (Association of Cancer Online Resources) Partner — Hosts the MPN-NET mailing list through ACOR's listserv infrastructure.
- Canadian MPN Group Partner — Collaborates with MPN Education Foundation in advancing MPN research and patient support
- Canadian MPN Network Partner — Collaborates to connect individuals with MPN support groups in Canada.
- Cancer Support Community Partner — Collaborates with MPN Education Foundation in advancing MPN research and patient support
- CancerCare Inc. Partner — Collaborates with MPN Education Foundation in advancing MPN research and patient support
- Eastern Cooperative Oncology Group Partner — Enrolled in ECOG clinical trial for interferon treatment of myeloproliferative neoplasm disorders.
- Fred Hutchinson Cancer Research Center Partner — Provides members to the Foundation's Scientific Advisory Board.
- Fred Hutchinson Cancer Research Center Partner — Scientific advisor Joachim Deeg, MD is affiliated with this institution, indicating collaborative research engagement.
- Guy’s and St. Thomas’ Hospital Partner — Provides members to the Foundation's Scientific Advisory Board.
- Guy’s and St. Thomas’ Hospital Partner — Scientific advisor Claire Harrison, MD is affiliated with this institution, indicating collaborative research engagement.
- Harvard Partner — Collaborated with D. Gary Gilliland's group on a study that identified the JAK2 mutation using online patient accrual.
- Incyte Corporation Funder — Provides sustaining financial support to the MPN Education Foundation.
- Leukemia & Lymphoma Society Partner — Collaborates with MPN Education Foundation in advancing MPN research and patient support
- MD Anderson Cancer Center Partner — Co-designed the Quality of Life Survey for MPN patients with Mayo and Harvard experts.
- MD Anderson Cancer Center Partner — Provides members to the Foundation's Scientific Advisory Board.
- MPN Advocacy and Education International Partner — Collaborates with MPN Education Foundation in advancing MPN research and patient support
- MPN Alliance Australia Partner — Collaborates with MPN Education Foundation in advancing MPN research and patient support
- MPN España Partner — Collaborates with MPN Education Foundation in advancing MPN research and patient support
- MPN Quality of Life Study Group Partner — Collaborates with MPN Education Foundation in advancing MPN research and patient support
- MPN Quality of Life Study Group Partner — Hosts and disseminates the research output of the MPN Quality of Life Study Group.
- MPN Research Consortium Partner — Collaborates by promoting the MPN-RC website and its clinical research initiatives.
- MPN Research Foundation Partner — Collaborates with MPN Education Foundation in advancing MPN research and patient support
- MPN Voice Partner — Collaborates with MPN Education Foundation in advancing MPN research and patient support
- MPN-NET Network — Community of members who support the MPN Education Foundation.
- MPN-RC Partner — Collaborates with MPN Education Foundation in advancing MPN research and patient support
- Mayo Clinic Partner — Co-sponsored patient conferences and collaborated on research and educational initiatives.
- Mayo Clinic Partner — Provides members to the Foundation's Scientific Advisory Board.
- Mayo Clinic Partner — Referred to hematologist at Mayo Clinic for ongoing treatment and monitoring of MPN condition.
- NORD – National Organization for Rare Disorders Partner — Collaborates with MPN Education Foundation in advancing MPN research and patient support
+ 4 more
strategies · 5
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Community-Sourced Symptom Knowledgemethodology: community-sourced symptom informationBy aggregating symptom management insights from both patients and physicians, the foundation creates practical, real-world resources because lived experience combined with clinical expertise produces more relevant and actionable guidance for MPN patients.
- Mind-Body Health Integrationmethodology: mind-body connectionBy incorporating meditation and relaxation techniques into patient support, the foundation improves emotional well-being during illness because mind-body practices help patients manage stress and build resilience in the face of chronic disease.
- Patient Network Facilitation for Researchmethodology: clinical-trial-accelerationBy connecting researchers with a global network of MPN patients through online platforms, the foundation accelerates clinical studies and surveys because direct access to engaged patient communities improves recruitment speed and data quality.
- Patient-Expert Education Forummethodology: patient-expert education forumBy connecting patients and caregivers directly with medical experts, the foundation improves understanding of MPN diagnosis, treatment, and management because access to authoritative, condition-specific knowledge empowers informed decision-making and enhances engagement with care.
- Scientific Collaboration with Patient Advocacymethodology: scientific_collaboration_and_patient_advocacyBy aligning scientific research initiatives with patient advocacy, the foundation accelerates progress in MPN research because unified action strengthens research prioritization, funding, and participation.