MDS Foundation

Name

MDS Foundation

Legal name

MDS Foundation

Website

https://mds-foundation.org

Company type

Private

Founded year

1994

Operating status

Operating

Headcount range

11–50 employees

Ownership category

akta.pro rank

Product category

Patient Advocacy and Nonprofit Health Support Services

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Patient advocacy services
• Medical education resources
• Disease awareness programs
• Caregiver support services
• Healthcare professional training

Headquarters

HQ city

New Jersey

HQ country

Trinidad & Tobago

HQ region

Latin America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Individual Donations: The foundation raises funds from individual donors. The website prominently features a 'Donate Now' call-to-action, and the About page states that donations enable all free programs and resources.
2. Industry/Pharmaceutical Partnerships: The foundation receives support from pharmaceutical companies (Agios, Bristol Myers Squibb, Geron, Taiho Oncology, and 20+ others listed on the About page) who co-support educational materials, webinars, and the Voices of MDS campaign. Bristol Myers Squibb is a named campaign partner for Voices of MDS.

Pricing tiers

Go-to-market motion3 records

Distribution channels5 records

Marketing channels10 records

Core offering

The MDS Foundation delivers free, multilingual patient education resources (Building Blocks of Hope handbooks, myMDS guides, newsletters), operates the MDS Exchange online community and Voices of MDS awareness campaign, runs professional symposia and webinars, and maintains a referral network of 194 recognized Centers of Excellence for MDS diagnosis and treatment.

Product overview

The MDS Foundation operates as a nonprofit patient advocacy organization offering a portfolio of educational resources, community platforms, and support services for myelodysplastic syndromes. Its core offerings include the Building Blocks of Hope (BBoH) handbook program available in 12+ languages, the myMDS gardening-themed guide with companion question resources, biannual newsletters, and the Voices of MDS campaign featuring the MDS Exchange online community powered by Colloquy. The Foundation also maintains a Centers of Excellence referral network with 194 facilities globally, delivers webinars on MDS-related topics, and provides an animated patient guide at youandmds.com. These resources work together to support patient education, community connection, and healthcare provider education across the MDS journey.

Differentiator

Problem solved

Functional benefit

Products and services

• Building Blocks of Hope (BBoH) A comprehensive patient handbook program providing in-depth information about MDS, AML, and MPN to help patients take an active role in their care journey; offered in 10+ languages for global accessibility.
• myMDS Resources A gardening-themed educational guide with companion question resources that helps people with lower-risk MDS understand their diagnosis, test results, and treatment options and supports meaningful conversations with healthcare teams; developed with support from Bristol Myers Squibb.
• MDSF Newsletters Biannual Spring and Fall newsletters providing foundation updates, research breakthroughs, and inspiring stories from the MDS community; available as free digital downloads.
• MDS Exchange Online Community An online community platform (powered by Colloquy Health) where patients, caregivers, healthcare professionals, researchers, and advocates connect, share stories, ask questions, and engage in discussions about MDS.
• Voices of MDS Campaign A year-round awareness initiative inviting MDS patients and caregivers to share their stories to inspire others, raise awareness, and inform foundation priorities; produces an annual Impact Report.
• Voices of MDS Impact Reports Annual reports highlighting themes and insights collected through Voices of MDS, featuring community perspectives and experiences from people living with MDS.
• MDS Foundation Webinars Live and virtual educational webinars for patients, caregivers, and healthcare professionals covering MDS-specific topics such as AI in MDS, caregiver training, and evolving treatment approaches.
• Centers of Excellence (COEs) Program A referral network of 194 recognized MDS Centers of Excellence (76 U.S. + 118 international) that the foundation uses to refer patients directly to specialized MDS diagnosis and treatment.
• You and MDS: An Animated Patient's Guide An animated online patient education resource providing an interactive guide to understanding myelodysplastic syndromes for newly diagnosed and exploring patients.

Quantifiable outcome

• 76 Centers of Excellence in the U.S. and 118 International COEs available for direct patient referral
• +3 more outcomes

Named customers6 records

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration1 record

Partnerships

31 partnerships are on record, tiered core and minor.

• Bristol Myers SquibbcoreGTM or Marketing PartnerBMS is a campaign partner (Activation Sponsor) for the Voices of MDS initiative, which amplifies patient stories to raise awareness of MDS. BMS also supports the myMDS resources developed in collaboration with leading advocacy organizations. BMS is listed among the foundation's industry partners.
• Agios PharmaceuticalscoreGTM or Marketing PartnerListed as an industry partner supporting the foundation's mission to advance MDS care. Named alongside other pharmaceutical partners as 'dedicated industry partners playing their part in finding a cure for MDS.'
• Geron CorporationcoreGTM or Marketing PartnerGeron is listed as an industry partner and supporter of the Building Blocks of Hope initiative, as well as a supporter of the Artificial Intelligence and Technology in MDS webinar (2026).
• Taiho OncologycoreGTM or Marketing PartnerTaiho Oncology is listed as an industry partner and supporter of the Artificial Intelligence and Technology in MDS webinar (2026).
• NovartiscoreGTM or Marketing PartnerListed as an industry partner and supporter of the Building Blocks of Hope initiative.
• Acceleron PharmacoreGTM or Marketing PartnerListed as a supporter of the Building Blocks of Hope initiative.
• Takeda OncologycoreGTM or Marketing PartnerListed as a supporter of the Building Blocks of Hope initiative.
• Celgene CorporationcoreGTM or Marketing PartnerListed as a supporter of the Building Blocks of Hope initiative.
• Ascentage PharmaminorGTM or Marketing PartnerListed among industry partners on the About page.
• Astellas PharmaminorGTM or Marketing PartnerListed among industry partners on the About page.
• Cogent BiosciencesminorGTM or Marketing PartnerListed among industry partners on the About page.
• CurisminorGTM or Marketing PartnerListed among industry partners on the About page.
• Daiichi SankyominorGTM or Marketing PartnerListed among industry partners on the About page.
• Faron PharmaceuticalsminorGTM or Marketing PartnerListed among industry partners on the About page.
• Gamida CellminorGTM or Marketing PartnerListed among industry partners on the About page.
• GenentechminorGTM or Marketing PartnerListed among industry partners on the About page.
• Gilead SciencesminorGTM or Marketing PartnerListed among industry partners on the About page.
• IncyteminorGTM or Marketing PartnerListed among industry partners on the About page.
• Janssen (Johnson & Johnson Innovative Medicine)minorGTM or Marketing PartnerListed among industry partners on the About page.
• Jazz PharmaceuticalsminorGTM or Marketing PartnerListed among industry partners on the About page.
• Karyopharm TherapeuticsminorGTM or Marketing PartnerListed among industry partners on the About page.
• Merck & Co.minorGTM or Marketing PartnerListed among industry partners on the About page.
• MorphoSysminorGTM or Marketing PartnerListed among industry partners on the About page.
• PfizerminorGTM or Marketing PartnerListed among industry partners on the About page.
• SanofiminorGTM or Marketing PartnerListed among industry partners on the About page.
• Servier U.S.minorGTM or Marketing PartnerListed among industry partners on the About page.
• Syros PharmaceuticalsminorGTM or Marketing PartnerListed among industry partners on the About page.
• MDS AlliancecoreStrategic or Co-development PartnerAn advocacy partner working alongside the foundation to advance education, awareness, and support for individuals affected by MDS.
• Know AMLcoreStrategic or Co-development PartnerAn advocacy partner working alongside the foundation to advance education, awareness, and support for AML/MDS-related diseases.
• ACUTE Leukemia (Academic Consortium for Transparent UH), now referred to as ACUTEminorStrategic or Co-development PartnerAn advocacy partner collaborating with the foundation on education and awareness initiatives.
• Blood Health Network (NHLBI)minorStrategic or Co-development PartnerAn advocacy partner supported by the National Heart, Lung, and Blood Institute (NHLBI), working to advance blood health education.

Scale indicators5 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• Aplastic Anemia & MDS International Foundation: The most direct peer — a U.S.-based nonprofit that similarly supports patients with MDS and related bone marrow failure disorders through education, support groups, and research funding, directly overlapping with MDSF's mission.
• MDS Alliance: An international coalition of MDS patient advocacy organizations. Functions as both a partner and peer in advancing MDS awareness, education, and support globally.
• Know AML: An advocacy partner and peer organization focused on acute myeloid leukemia, with overlapping educational resources, healthcare professional engagement, and pharmaceutical sponsorship model — directly comparable to MDSF's mission.

Broad incumbents

• Lymphoma Research Foundation: A larger U.S. blood cancer nonprofit with overlapping patient-education and research-funding missions; notably the previous employer of MDSF's new CEO, providing relevant comparable scale and operational model.
• The Leukemia & Lymphoma Society: The largest U.S. blood cancer nonprofit, funding research and providing patient services across leukemia, lymphoma, myeloma, and MDS. Operates as a broad incumbent that also touches the MDS patient population.
• National Organization for Rare Disorders (NORD): U.S. umbrella organization for rare disease patient groups, including MDS. Comparable as an advocacy and research-funding nonprofit operating in the rare disease space that MDSF also occupies.
• American Cancer Society: The largest U.S. cancer nonprofit with broad fundraising, research, and patient-support programs. Comparable as a peer in scale of cancer patient advocacy, though MDS is one of many diseases it touches.

Emerging players

• International Myeloma Foundation: A specialty blood cancer nonprofit focused on multiple myeloma — a related but distinct hematologic malignancy. Comparable as a disease-specific patient advocacy and research organization with a similar operational model.
• Cancer Support Community: A nonprofit delivering psychosocial support, education, and community programs to cancer patients and families. Comparable for its community-building and patient-support service model, though it spans all cancer types.
• Patient Advocate Foundation: A national nonprofit providing case management and financial assistance to patients with chronic and rare diseases, including cancer. Comparable for its patient-navigation and case-management mission, though it serves a broader disease universe.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/MDSFoundation
• Facebookfacebook.com/MDSFoundation
• LinkedInlinkedin.com/company/mds-foundation-inc

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds1 record

Investors1 record

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M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about MDS Foundation