The Aplastic Anemia and MDS International Foundation

What The Aplastic Anemia and MDS International Foundation does

The Aplastic Anemia and MDS International Foundation (AAMDSIF) is a 501(c)(3) nonprofit health organization founded in 1983 and headquartered in Rockville, Maryland (401 N. Washington Street, Suite 430). It serves as the world's leading patient advocacy organization specifically focused on aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases, supporting patients, families, and healthcare professionals across all three phases of the disease journey: diagnosis, treatment, and chronic living.

AAMDSIF's service portfolio spans education and content (disease-specific Patient Toolkits, Patient Guides and Fact Sheets, webinars, podcasts, Patient and Family Conferences, and Stories of Hope patient chronicles), direct support services (a Patient and Family HelpLine at 800-747-2820, Peer Support Network, and virtual support groups), clinical navigation (Find a Specialist directory, clinical trial information), research infrastructure (a Global PNH Patient Registry, the AAMDSIF Research Grants Program, and a Department of Defense Research Grant Program), and advocacy (Advocacy in Action program). Distribution is delivered through a website platform, helpline, regional in-person conferences, and a multi-channel digital presence (social media, email, podcast). The foundation's technology stack is a content-and-community platform rather than a software product; it does not offer APIs, mobile apps, or AI-driven services.

The business model is donation-dependent: AAMDSIF operates as a tax-exempt nonprofit funded by individual charitable contributions, corporate partnerships that underwrite specific programs, and community fundraising events such as March for Marrow walks. Services are provided free to patients and families. The organization is governed by a Board of Directors, supported by a Medical Advisory Board and Patient Advisory Council, and holds Charity Navigator and Guidestar Seal of Transparency credentials. Revenue figures are not publicly disclosed in the source materials.

Name

The Aplastic Anemia and MDS International Foundation

Legal name

Aplastic Anemia and MDS International Foundation

Website

https://aamds.org

Company type

Private

Founded year

1983

Operating status

Operating

Headcount range

11–50 employees

Short description

The Aplastic Anemia and MDS International Foundation (AAMDSIF) is a 501(c)(3) nonprofit founded in 1983 in Rockville, Maryland that educates, supports, and advocates for patients and families affected by aplastic anemia, MDS, PNH, and related bone marrow failure diseases through educational content, peer support, a helpline, research grants, and patient registries.

Ownership category

akta.pro rank

Product category

Patient Advocacy Nonprofit Services

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190), Individual and Family Services (6241)

SIC

Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090), Services-Health Services (8000)

akta.pro primary industry

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

akta.pro secondary industry

Public Health Financing, Budgeting & Grants Management (HLAJAMAC)

Keywords

• Patient advocacy services
• Bone marrow failure diseases
• Patient education resources
• Peer support programs
• Nonprofit health research

Headquarters

HQ city

Bethesda

HQ country

United States

HQ region

North 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. Donations and Charitable Contributions: The organization operates as a 501(c)(3) nonprofit that relies on donations from individuals, families, and supporters to fund its patient education, support services, and research programs.
2. Corporate Partnerships: Collaboration with corporate sponsors who support the podcast series, patient education materials, and organizational programs.
3. Fundraising Events: Community fundraising events including March for Marrow walks and other community fundraisers to generate donations and awareness.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels8 records

Core offering

AAMDSIF provides free educational programs, patient support services, and research funding for individuals and families affected by aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases. Core offerings include disease-specific patient toolkits, conferences, webinars and podcasts; a patient helpLine, peer support network, and virtual support groups; a find-a-specialist directory; the Global PNH Patient Registry and research grant programs; and advocacy initiatives such as AAMDSIF Advocacy in Action and the PNH Patient Travel Assistance Fund.

Product overview

AAMDSIF offers a comprehensive portfolio of educational, support, and research programs for patients and families affected by aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases. The organization's core offerings include Patient Toolkits (Aplastic Anemia, MDS, PNH) providing disease-specific information; educational content through conferences, webinars, podcasts, and patient guides; support services including a HelpLine, Peer Support Network, and virtual support groups; a Personalized Search tool for filtering resources by disease and journey phase; research programs including a Global PNH Patient Registry and Research Grants; and advocacy programs. The organization does not offer a technology product or software platform.

Differentiator

Problem solved

Functional benefit

Products and services

• Patient and Family Conferences In-person and virtual educational conferences providing patients and families with information about bone marrow failure diseases, treatment options, and survivor stories.
• Patient and Family Webinars Online educational presentations featuring medical experts discussing disease management, treatments, and research updates for aplastic anemia, MDS, PNH, and related conditions.
• AAMDSIF Podcast for Patients Audio podcast series featuring patient stories, expert interviews, and discussions about living with bone marrow failure diseases.
• Patient Guides and Fact Sheets Printable and downloadable educational materials covering disease basics, symptoms, diagnosis, treatments, and coping strategies.
• Patient and Family HelpLine Telephone helpline providing personalized support, answers to questions, and connections to resources for patients and families affected by bone marrow failure diseases.
• Peer Support Network Program connecting patients and families with trained peer volunteers who have lived experience with bone marrow failure diseases.
• Find a Specialist Directory of hematologists and bone marrow failure disease specialists to help patients locate appropriate medical care.
• Patient and Family Virtual Support Groups Online support group meetings providing emotional support and connection for patients and families.
• Aplastic Anemia Toolkit Comprehensive educational toolkit with information about aplastic anemia, treatment options, and practical guidance for patients and families.
• MDS Toolkit Comprehensive educational toolkit with information about myelodysplastic syndromes, treatment options, and practical guidance for patients and families.
• PNH Toolkit Comprehensive educational toolkit with information about paroxysmal nocturnal hemoglobinuria, treatment options, and practical guidance for patients and families.
• Global PNH Patient Registry Sponsored research initiative collecting patient data to advance understanding of paroxysmal nocturnal hemoglobinuria and support clinical research.
• AAMDSIF Research Grants Program Grant program funding scientific research into bone marrow failure diseases, including aplastic anemia, MDS, and PNH.
• Department of Defense Research Grant Program Grant program facilitating bone marrow failure disease research funded through Department of Defense appropriations.
• Personalized Search Search tool allowing patients and families to filter content by disease type, audience, journey phase, and content type to find relevant resources.
• Stories of Hope (Patient Chronicles) Collection of patient stories documenting journeys with bone marrow failure diseases, providing hope and practical insights for others facing similar challenges.
• Professional On-Demand Education Webinars and conference recordings for healthcare professionals covering latest research, treatments, and best practices in bone marrow failure disease care.
• Health and Wellness Resources Resources covering caring for yourself, advice for caregivers, and veteran patient care to support overall wellbeing during treatment and recovery.
• PNH Patient Travel Assistance Fund Program providing travel assistance to help PNH patients access treatment at specialized centers.
• AAMDSIF Advocacy in Action Program enabling patients and families to advocate for research funding, healthcare policies, and awareness of bone marrow failure diseases.

Quantifiable outcome

• Served thousands of patients and families around the world

Named customers4 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature1 record

Partnerships

One partnership is on record.

• Corporate SponsorsminorOthersCorporate partners who provide financial support for the podcast series, patient education materials, and organizational programs. Acknowledged during podcast episodes and organizational communications.

Scale indicators3 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• MDS Foundation: Disease-specific nonprofit dedicated to myelodysplastic syndromes, providing patient education, professional education, and research support — the most direct peer to AAMDSIF, overlapping heavily on MDS programming and patient audiences.
• National Marrow Donor Program / Be The Match: Operates the US bone marrow donor registry and supports patients undergoing transplant for diseases including aplastic anemia, MDS, and PNH — directly relevant given AAMDSIF patients frequently intersect with transplant pathways.
• National Bone Marrow Transplant Link (nbmtLink): Nonprofit providing peer support and educational resources specifically to bone marrow transplant patients and caregivers — serves a substantial subset of the AAMDSIF patient journey and competes for similar donor and grant dollars.
• Aplastic Anemia & MDS International Foundation - PNH Research Foundation: The AAMDSIF organization itself maintains PNH-specific research and support programming that overlaps with standalone PNH-focused efforts — the foundation's PNH portfolio competes with and complements narrower PNH advocacy efforts.
• MPN Research Foundation: Patient-focused foundation supporting research and education for myeloproliferative neoplasms, a closely related blood cancer category that frequently overlaps clinically and demographically with AAMDSIF's MDS audience.

Broad incumbents

• Leukemia & Lymphoma Society: Largest US blood cancer nonprofit funding research and patient services across leukemia, lymphoma, MDS, and related diseases — broader portfolio but overlapping patient populations with AAMDSIF, particularly MDS and AML.
• National Organization for Rare Disorders (NORD): Umbrella advocacy organization representing ~300 rare disease patient groups including aplastic anemia and PNH — operates at a higher altitude than AAMDSIF but competes for rare-disease donor mindshare and policy influence.
• Cancer Support Community: National nonprofit providing social and emotional support, education, and navigation services to cancer patients including those with blood cancers — adjacent model serving overlapping psychosocial support needs.
• American Cancer Society: Largest US cancer nonprofit with broad research, patient support, and advocacy programs that touch most cancer types including aplastic anemia and MDS — competes for general donor dollars and corporate partnerships at the broadest scale.

Emerging players

• CLL Society: Dedicated chronic lymphocytic leukemia patient advocacy and education nonprofit — operates a similar disease-specific nonprofit model targeting a related hematologic malignancy, useful as a comparable for organizational design.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/aamdsif
• Facebookfacebook.com/aamds

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

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Frequently asked questions about The Aplastic Anemia and MDS International Foundation