MPN Advocacy & Education International

What MPN Advocacy & Education International does

MPN Advocacy & Education International is a private nonprofit patient advocacy organization headquartered in East Lansing, Michigan, dedicated exclusively to myeloproliferative neoplasms (MPNs)—myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia (ET). The organization provides educational programs, materials, and resources free of charge to patients, caregivers, physicians, and healthcare teams, including in-person and virtual MPN Patient Education Programs and Workshops, a monthly newsletter (MPN Community Connection), an MPN Brochure (PDF), a Clinical Trials Information Portal across MF, ET, and PV, an Emergency Blood Card program for patient safety communication, a Women & MPNs track including an annual Women & MPN Conference, a Pediatric MPN content vertical, and a directory of support groups spanning the United States and international markets. Operational headcount is 1–10 employees, leadership consists of CEO and Founder Ann Brazeau and President Natalie Giocondo, and the organization is governed by a published Code of Ethics and Leadership page.

The business model is nonprofit, with no pricing charged to end users and no disclosed commercial product line. Operating support is drawn from a deep industry (biopharmaceutical) partner roster that includes Incyte, PharmaEssentia (manufacturer of ropeginterferon alfa-2b/BESREMi), GSK (developer of momelotinib), Sobi (manufacturer of VONJO/pacritinib), Merck (developer of Bomedemstat), Takeda Pharmaceuticals, Disc Medicine, Kartos Therapeutics, and Calytrix Bio, alongside a coalition of organizational partners including the Leukemia & Lymphoma Society, MPN Research Foundation, Cancer Research & Treatment Fund, CancerCare, Cancer Support Community, NORD, AAMDSIF, Patient Power, the Myeloproliferative Neoplasm Research Consortium, MPN Forum, BMT InfoNet, PV Reporter, MDS Foundation, the PAN Foundation, the Leukaemia Foundation (Australia), Friends of ET, and the MPN Education Foundation. Distribution is anchored on the mpnadvocacy.com WordPress site, a YouTube archive of recorded webinars, and Constant Contact newsletter delivery; no mobile app, API surface, or proprietary technology platform is disclosed. Operating geographies span at least nine countries (USA, Australia, Canada, UK, France, Germany, Japan, Netherlands, Spain), and the organization is active through 2026 with recurring programs.

Name

MPN Advocacy & Education International

Legal name

MPN Advocacy & Education International

Website

https://mpnadvocacy.com

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

MPN Advocacy & Education International is a private nonprofit that delivers free educational programs, resources, and support to patients, caregivers, and clinicians affected by myeloproliferative neoplasms (myelofibrosis, polycythemia vera, essential thrombocythemia).

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Voluntary Health Organizations (813212), Educational Support Services (611710), Educational Support Services (6117)

SIC

Services-Misc Health & Allied Services, Nec (8090), Services-Educational Services (8200), Services-Health Services (8000)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Community Health, Prevention & Health Education (BPAGACAC)

Keywords

• Patient advocacy services
• MPN education programs
• Blood cancer support
• Clinical trial information
• Caregiver resources

Headquarters

HQ city

East Lansing

HQ country

United States

HQ region

North America

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Distribution channels1 record

Marketing channels7 records

Core offering

MPN Advocacy & Education International provides free educational programs, materials, and resources for MPN patients, caregivers, physicians, and healthcare teams affected by myelofibrosis, polycythemia vera, and essential thrombocythemia. Core offerings include a monthly newsletter, in-person and virtual education programs with MPN specialists, a clinical trials information portal, an Emergency Blood Card program, support group coordination, and disease-specific resources.

Product overview

MPN Advocacy & Education International is a patient advocacy and education organization that provides a comprehensive suite of resources and programs for patients, caregivers, physicians, and healthcare teams affected by myeloproliferative neoplasms (MPNs). The organization operates as a unified service platform rather than a product-based company, offering the MPN Community Connection Newsletter, Emergency Blood Card program, MPN Patient Education Programs, Video Events/Webinars, an MPN Brochure PDF, a Clinical Trials Information Portal, MPN Support Groups directory, Women and MPNs resources, and Patient Story Submissions platform. These services collectively focus on myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia (ET).

Differentiator

Problem solved

Functional benefit

Products and services

• MPN Community Connection Newsletter

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

26 partnerships are on record, tiered core and minor.

• IncytecoreGTM or Marketing PartnerIncyte is a global biopharmaceutical company focused on finding solutions for serious unmet medical needs through the discovery, development and commercialization of novel medicines. They are a prominent industry partner supporting MPN education and awareness initiatives.
• PharmaEssentiacoreGTM or Marketing PartnerPharmaEssentia is a global biopharmaceutical company delivering therapeutic products for myeloproliferative neoplasms (MPNs) including polycythemia vera (PV) and essential thrombocythemia (ET). They developed ropeginterferon alfa-2b (BESREMi) for PV treatment.
• Takeda PharmaceuticalscoreGTM or Marketing PartnerTakeda Pharmaceuticals is focused on discovering, developing and delivering life-transforming medicines for rare and more prevalent diseases across Oncology, Neuroscience and Gastrointestinal/ Inflammation areas.
• GSKcoreGTM or Marketing PartnerGSK is a global biopharma company advancing targeted therapeutics for patients with unmet medical needs in hematology and oncology. Their lead drug candidate momelotinib is being evaluated for myelofibrosis treatment.
• SobicoreGTM or Marketing PartnerSobi is a biopharmaceutical company with FDA-approved drug VONJO (pacritinib) indicated for treatment of adults with intermediate or high-risk primary or secondary myelofibrosis with low platelet counts.
• Disc MedicinecoreGTM or Marketing PartnerDisc Medicine is a biopharmaceutical company dedicated to transforming the lives of patients with hematologic disorders, developing innovative therapeutic candidates affecting fundamental pathways of red blood cell biology.
• MerckcoreGTM or Marketing PartnerMerck is developing Bomedemstat, an LSD1 inhibitor for the treatment of myelofibrosis and essential thrombocythemia. LSD1 is an epigenetic regulator critical for myelopoiesis.
• Kartos TherapeuticscoreGTM or Marketing PartnerKartos Therapeutics is a privately held, clinical-stage biopharmaceutical company developing MDM2 inhibitors for hematology and oncology treatment.
• Calytrix BiominorGTM or Marketing PartnerCalytrix Bio is listed as an industry partner supporting MPN education initiatives.
• Leukemia & Lymphoma SocietycoreStrategic or Co-development PartnerThe Leukemia & Lymphoma Society (LLS) is the world's largest non-profit health agency dedicated to helping patients with blood cancer and their families. LLS funds blood cancer research around the world and provides free information and support services.
• MPN Research FoundationcoreStrategic or Co-development PartnerThe MPN Research Foundation stimulates original research in pursuit of new treatments and eventually a cure for polycythemia vera, essential thrombocythemia and myelofibrosis (MPNs). They bring together patients, researchers and clinicians.
• Cancer Research & Treatment Fund, Inc.coreStrategic or Co-development PartnerFor more than four decades, CR&T has funded the world's most promising physician-scientists to advance treatment of blood cancers including MPNs, leukemia, lymphoma, and other cancers.
• CancerCarecoreStrategic or Co-development PartnerCancerCare is a non-profit organization providing free, professional support services to individuals, families, caregivers, and the bereaved to help them cope with and manage emotional and practical challenges arising from cancer.
• Cancer Support CommunitycoreStrategic or Co-development PartnerThe Cancer Support Community offers free services including support groups, educational programs, healthy lifestyle classes, and social networking opportunities for people with any type or stage of cancer.
• National Organization for Rare Disorders (NORD)coreStrategic or Co-development PartnerNORD was established in 1983 as an umbrella organization providing advocacy, education, and awareness on behalf of all patients and families affected by rare diseases. Approximately 300 rare disease organizations are members of NORD.
• Aplastic Anemia and MDS International FoundationcoreStrategic or Co-development PartnerAAMDSIF supports, connects and educates patients, caregivers and health professionals on bone marrow failure diseases, including aplastic anemia, MDS, PNH and related diseases.
• Patient PowercoreStrategic or Co-development PartnerPatient Power connects patients and care partners to an active community of cancer experts and patient advocates across a wide range of cancers, including ET, PV and MF. They help patients feel empowered to advocate for themselves through video interviews, forums, blogs and webcasts.
• Myeloproliferative Neoplasm Research ConsortiumcoreStrategic or Co-development PartnerThe MPN-RC is an interactive group of laboratory scientists, clinical scientists, and a biostatistics team working to develop and evaluate treatments for myeloproliferative neoplasms. Investigators from over 30 institutions in US, Canada, Europe, and Israel have participated.
• MPN ForumcoreStrategic or Co-development PartnerFounded in 2011, MPNforum and its companion MPN Quarterly Journal are open source publications managed by patients and caregivers with volunteer participation of scientists, hematologists and healthcare providers. With 12,000+ monthly readers, it is the most widely followed independent international online magazine focused on MPN patients and caregivers.
• BMT InfonetcoreStrategic or Co-development PartnerBlood & Marrow Transplant Information Network (BMT InfoNet) is a not-for-profit organization dedicated to providing transplant patients, survivors and their loved ones with emotional support and high quality information about bone marrow, peripheral blood stem cell and cord blood transplants.
• PV ReportercoreStrategic or Co-development PartnerPV Reporter provides easy access to pertinent information on PV, ET and MF. It is an MPN research tool featuring comprehensive, timely information helping patients make better treatment decisions affecting their care.
• MDS Foundation Inc.coreStrategic or Co-development PartnerThe Myelodysplastic Syndromes Foundation was established by an international group of physicians and researchers to provide an ongoing exchange of information relating to MDS.
• Patient Access Network (PAN) FoundationcoreStrategic or Co-development PartnerThe PAN Foundation is an independent, national 501(c)(3) organization dedicated to helping underinsured people living with life-threatening, chronic and rare diseases with out-of-pocket costs for prescribed medications. Since founding in 2004, PAN has provided nearly 1 million underinsured patients with over $2.6 billion in financial assistance.
• Friends of ETcoreStrategic or Co-development PartnerFriends of ET is committed to raising funds to support research for Essential Thrombocythemia (ET) and other Myeloproliferative Neoplasms (MPNs). These are rare bone marrow/blood cancers with no known cure and few treatments.
• The Leukaemia Foundation-AustraliacoreStrategic or Co-development PartnerThe Leukaemia Foundation is Australia's only national charity dedicated to helping those with leukaemia, lymphoma, myeloma, MPN and related blood disorders survive and then live a better quality of life.
• MPN Education FoundationcoreStrategic or Co-development PartnerThe MPN Education Foundation is a non-profit organization incorporated in 2004 and run by volunteer MPN patients. It hosts patient-doctor conferences to improve patient knowledge about MPNs and provide opportunities to meet with top MPN specialists. These events take place every two years.

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• CancerCare: A national nonprofit providing free professional support services, counseling and education to cancer patients, caregivers and the bereaved across tumor types including blood cancers. Listed as an Organizational Partner of MPN Advocacy; competes for HCP referrals and donor dollars in the broader cancer education/support category.
• National Organization for Rare Disorders (NORD): The leading US umbrella advocacy organization for rare diseases (300+ member organizations including MPN Advocacy). NORD provides broader advocacy, policy and educational infrastructure and competes for industry grants and rare-disease sponsorship dollars across the entire rare-disease portfolio.
• Cancer Support Community: A large nonprofit offering free support groups, educational programs and lifestyle classes to people with any type or stage of cancer. Listed as an Organizational Partner of MPN Advocacy; competes for general cancer patient mindshare and overlaps on the psychosocial support and education services that MPN Advocacy provides.
• Leukemia & Lymphoma Society (LLS): The world's largest blood-cancer nonprofit, funding research and providing patient education/support across leukemia, lymphoma, myeloma and other blood cancers including MPNs. Listed as a Core Organizational Partner of MPN Advocacy. LLS is a much larger incumbent that competes for the same MPN patient audience and pharma sponsorships.

Emerging players

• MDS Foundation: An international physician/researcher-led nonprofit focused on myelodysplastic syndromes (MDS), a closely adjacent hematologic malignancy category. Listed as an Organizational Partner; competes for hematology specialist engagement and pharma sponsorship in the overlapping bone-marrow-disorder space.
• Aplastic Anemia and MDS International Foundation (AAMDSIF): A nonprofit supporting patients with bone marrow failure diseases including MDS, which is closely adjacent to MPNs in hematology. Listed as an Organizational Partner; competes for mindshare in the broader rare blood-cancer/marrow-disorder patient community and partner attention.

Direct peers

• MPN Forum / MPN Quarterly Journal: An independent, patient-run online publication covering MPNs with 12,000+ monthly readers. Listed as an Organizational Partner of MPN Advocacy; a comparable direct-to-patient MPN content channel competing for the same niche audience.
• Patient Power: An online health media company producing video interviews, webcasts and forums connecting cancer patients (including ET, PV and MF) with experts and advocates. Listed as an Organizational Partner of MPN Advocacy; competes directly for the MPN digital education audience and pharma-sponsored content programs.
• MPN Research Foundation: The MPN Research Foundation is a direct peer: a nonprofit dedicated exclusively to myeloproliferative neoplasms (MF, PV, ET), funding research toward new treatments. Listed as a mutual Organizational Partner on MPN Advocacy's site, it competes for the same patient/industry attention and donor dollars.
• MPN Education Foundation: The MPN Education Foundation is a direct peer: a volunteer-run MPN patient nonprofit that hosts patient-doctor conferences on myeloproliferative neoplasms. It is listed as an Organizational Partner and overlaps directly in mission (MPN patient education) and audience.

Market position

Strengths5 records

Weaknesses4 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/channel/UCk9lLyp2L9BBeCEcckoUijA
• Xx.com/mpnadvocacy
• Facebookfacebook.com/mpnadvocacy
• LinkedInlinkedin.com/company/mpn-advocacy-education-international

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about MPN Advocacy & Education International