Global Action Network for Sickle Cell & Other Inherited Blood Disorders

What Global Action Network for Sickle Cell & Other Inherited Blood Disorders does

GANSID (Global Action Network for Sickle Cell & Other Inherited Blood Disorders) is a nonprofit global health network organization headquartered at 8 The Green, Suite 4000, Dover, Delaware, USA. Formally launched in April 2023 following a pre-launch coalition meeting in Lagos, Nigeria in February 2023, the organization convenes patient organizations, healthcare providers, researchers, and policymakers to advance advocacy, education, and research for sickle cell disease and other inherited blood disorders including thalassemia, hemophilia, pyruvate kinase deficiency (PKD), aplastic anemia, and Fanconi anemia. It operates regional networks — Africa Region (AFR) and Southeast Asia Region (SEAR) — with active member presence across at least 15 countries in North America, Africa, Asia, Europe, and the Middle East, led by CEO Lanre Tunji-Ajayi and Board Chairman Prof. Adekunle Adekile.

The organization's service portfolio centers on an Annual International Congress (third edition held virtually November 14-15, 2025; fourth scheduled in-person in Hyderabad, India, October 23-25, 2026) and a set of capacity-building programs including a global mentorship program pairing senior hematologists with emerging practitioners, e-learning courses, regional and global clinician online forums, journal club web sessions, clinical trials resources, and the World Inherited Blood Disorders Day observed annually on October 18. The underlying technology stack is a standard nonprofit/community digital footprint: a WordPress-based website (inheritedblooddisorders.world), a YouTube channel hosting webinar and congress recordings, WhatsApp community forums, and active social channels (Facebook, Twitter/X, Instagram, LinkedIn). No proprietary AI/ML technology, mobile app, API, or SDK is disclosed.

GANSID's revenue is generated through three streams: pharmaceutical congress sponsorships (Vertex, Agios, Pfizer as Silver sponsors; Roche and Novartis as supporting sponsors of the 2025 Congress), individual and institutional donations via its 'Donate Today' channel, and recurring membership fees from affiliated patient organizations. Distribution is community-led and event-driven, with no transactional product revenue, no venture capital backing, and no parent company disclosed. The organization employs fewer than 10 staff but operates through an extended governance and partnership network that includes the American Society of Hematology (ASH), World Federation of Hemophilia (WFH), Thalassemia International Federation (TIF), National Bleeding Disorders Foundation (NBDF), World Health Organization (WHO), and the SickleInAfrica-SPARCO consortium.

Name

Global Action Network for Sickle Cell & Other Inherited Blood Disorders

Legal name

Global Action Network for Sickle Cell & Other Inherited Blood Disorders

Website

https://inheritedblooddisorders.world

Company type

Private

Founded year

2023

Operating status

Operating

Headcount range

1–10 employees

Short description

GANSID is a nonprofit global health network founded in 2023 that convenes patient organizations, clinicians, researchers, and policymakers to advance advocacy, education, and research for sickle cell disease and other inherited blood disorders across regional hubs in Africa, Southeast Asia, and beyond.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Voluntary Health Organizations (813212), Social Assistance (624)

SIC

Services-Membership Organizations (8600), Services-Social Services (8300)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Global Health Research, Clinical Trials & Product Development Partnerships (PDPs) (HLAJAOAM), Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Sickle cell advocacy
• Patient organization network
• Inherited blood disorders
• Clinical education programs
• Healthcare capacity building

Headquarters

HQ city

Dover

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Revenue model

1. Congress Sponsorships: Pharmaceutical companies including Vertex, Agios, Pfizer, Roche, and Novartis provide financial support through congress sponsorships. These industry partners enable the organization to continue impacting clinicians and patient organizations through annual congresses.
2. Donations: The organization accepts donations through its 'Donate Today' channel to support programs and initiatives.
3. Membership Fees: GANSID operates a membership program for patient organizations and affiliates with associated membership fees.

Go-to-market motion2 records

Distribution channels3 records

Marketing channels7 records

Core offering

GANSID operates as a global nonprofit network that unites patient organizations, healthcare providers, and researchers to advocate for people living with sickle cell disease and other inherited blood disorders. It delivers services through an annual international congress, mentorship programs, e-learning curricula, clinician forums, clinical trial resources, journal clubs, regional networks, webinars, and an annual World Inherited Blood Disorders Day.

Product overview

GANSID (Global Action Network for Sickle Cell & Other Inherited Blood Disorders) is a nonprofit global health organization that operates as a network rather than a traditional software product company. The organization's service portfolio centers around its Annual Congress (currently in its 4th edition scheduled for 2026 in Hyderabad, India), capacity-building programs including a Mentorship Program connecting experienced physicians with newer practitioners, E-Learning courses for healthcare providers and patient organizations, Clinician Online Forums (regional and global), Clinical Trials Resources, Journal Club Web Sessions, and Congress Webcasts. GANSID also leads awareness initiatives such as World Inherited Blood Disorders Day (October 18th) and maintains Regional Networks across Africa and Southeast Asia to coordinate local advocacy and care efforts.

Differentiator

Problem solved

Functional benefit

Products and services

• International Congress on Sickle Cell & Other Inherited Blood Disorders Annual international forum convening clinicians, scientists, patient advocates, and industry to share advances in sickle cell and inherited blood disorder care. For the global hematology and patient-advocacy community.
• Mentorship Program

Named customers4 records

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Seven partnerships are on record, tiered core and regional.

• American Society of Hematology (ASH)coreStrategic or Co-development PartnerASH collaborates with GANSID on global sickle cell disease activities including the Consortium on Newborn Screening in Africa (CONSA), a demonstration study on newborn screening in seven sub-Saharan African countries. Andrew Zapfel, ASH's Deputy Director of Global Programs and Alliances, presents on strategic workplans and oversees GANSID congress sessions.
• World Federation of Hemophilia (WFH)coreStrategic or Co-development PartnerDr. Leonard A. Valentino serves as President of WFH USA and participates in GANSID as Co-Chair of Congress 2025. WFH collaborates on global bleeding disorder initiatives.
• National Bleeding Disorders Foundation (NBDF)coreStrategic or Co-development PartnerNBDF's Chief Medical and Science Officer Dr. Michael Recht and Senior Vice President Dr. Keri Norris collaborate with GANSID. Dr. Norris leads health access and strategic innovation at NBDF.
• SickleInAfrica-SPARCOcoreStrategic or Co-development PartnerMulti-country initiative spanning eight African nations coordinated by Dr. Agnes Jonathan at MUHAS (Tanzania). Contributes to GANSID's regional registry expansion and clinical trial coordination efforts.
• National Sickle Cell Disease Taskforce (Zambia)regionalStrategic or Co-development PartnerDr. Catherine Chunda-Liyoka chairs Zambia's National Sickle Cell Disease Taskforce and coordinates newborn screening programs, collaborating with GANSID on regional initiatives.
• Thalassemia International Federation (TIF)coreStrategic or Co-development PartnerMr. Riyad Elbard serves as Treasurer on TIF's Board since 1998. TIF collaborates on international thalassemia advocacy, guidelines, and patient organization support.
• World Health Organization (WHO)coreStrategic or Co-development PartnerGANSID conducts advocacy with WHO on inherited blood disorders. Prof. Adekunle Adekile served as consultant to WHO/AFRO on SCD management in Africa.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Regional players

• Sickle Cell Foundation of Ghana: Regional West-African SCD advocacy and clinical organization. Comparable in mission and patient advocacy focus, but geographically concentrated in Ghana rather than globally distributed like GANSID.

Direct peers

• Cooley's Anemia Foundation: US-based patient advocacy organization for thalassemia (Cooley's anemia). Directly comparable in single-disease patient advocacy, education, and research funding — competes for similar thalassemia patient advocacy mindshare.
• National Bleeding Disorders Foundation (NBDF): US-based advocacy organization for people with bleeding disorders including hemophilia. Strategic partner to GANSID; highly comparable in patient organization capacity building and clinician education programs.
• Sickle Cell Disease Association of America (SCDAA): Long-established US-based sickle cell disease advocacy organization representing patient organizations and providers. Directly comparable to GANSID in mission (SCD patient advocacy, education, and convening) but with a national US rather than global footprint.
• Global Alliance of Sickle Cell Disease Organizations (GASCDO): Global umbrella for sickle cell disease patient organizations, co-founded by GANSID CEO Lanre Tunji-Ajayi. Most directly overlapping peer — both global sickle cell advocacy umbrellas — creating potential overlap and coordination questions.
• World Federation of Hemophilia (WFH): Global umbrella network for inherited bleeding disorders (hemophilia, von Willebrand disease). Highly comparable in structure and disease coverage, with established global registry (World Bleeding Disorders Registry) and annual congress — a benchmark for GANSID's model.
• Thalassemia International Federation (TIF): Global umbrella organization for thalassemia patient associations and clinicians. Most directly comparable peer — operates at the same disease-specific umbrella level across countries; GANSID Board Member Riyad Elbard also sits on TIF's Board.

Broad incumbents

• American Society of Hematology (ASH): Largest global professional society for hematologists. A core GANSID strategic partner (CONSA consortium), and broadly comparable in hosting hematology education, but as a much larger incumbent with a broader remit than inherited blood disorders alone.
• National Organization for Rare Disorders (NORD): US-based umbrella advocacy organization for rare diseases, including rare blood disorders. Comparable in advocacy and education mission at scale, but US-centric rather than globally distributed across the same disease areas.

Emerging players

• EURORDIS – Rare Diseases Europe: European-level umbrella for rare disease patient organizations. Comparable in advocacy and policy engagement on rare diseases including inherited blood disorders, but focused on European regulatory/policy pathways rather than global LMIC delivery.

Market position

Strengths4 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xtwitter.com/IBloodDisorders
• YouTubeyoutube.com/channel/UCOga5_Rfmsr4ubtA7C6901w
• Facebookfacebook.com/iblooddisorders
• LinkedInlinkedin.com/company/iblooddisorders
• Instagraminstagram.com/iblooddisorders

Revenue estimate

Valuation estimate

Number of profiles

Profiles6 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Global Action Network for Sickle Cell & Other Inherited Blood Disorders