Global Sickle Cell Support Directory

Finding care, community, and support, wherever you are.

On World Sickle Cell Day, communities around the world unite to bring an invisible condition into the light. But raising awareness is just the first step. Navigating Sickle Cell Disease (SCD) takes a team, and no one should have to battle a pain crisis or look for specialized care alone.

This directory is a completely free, verified resource designed to instantly connect patients, families, caregivers, and advocates with trusted NGOs, clinical networks, and local charities worldwide.

How to Use the Directory

We have organised over 50 global organisations by geographic region to keep your search as simple as possible:

  • Find Your Region: Scroll down to locate the geographic region closest to you.

  • Expand the List: Click on the region's title block to open the dropdown list.

  • Connect Directly: Browse the organization types and core services, then click the website link to go directly to their platform for local care, patient registries, or community support groups.

    • Global Alliance of Sickle Cell Disease Organisations (GASCDO) — International (Global alliance)

      • Overview: First global body representing people living with SCD worldwide (est. 2020, Amsterdam)

      • Focus: Global advocacy, national/regional member network, awareness

      • Link: globalscd.org

    • Sickle Cell Disease International Organization (SCDIO) — International (International organisation)

      • Overview: Coordinates global action to lower child mortality from sickle cell disease

      • Focus: Global awareness, fundraising, partnerships, advocacy

      • Link: globalscd.org

    • World Coalition on Sickle Cell Disease — International (Coalition)

      • Overview: Global coalition uniting stakeholders to advance the SCD agenda worldwide

      • Focus: Global coalition advocacy, awareness, collaboration

      • Link: worldscdcoalition.org

    • SickleInAfrica Consortium — International (Africa) (Research consortium)

      • Overview: Africa's largest sickle cell research & data collaboration (SADaCC, SPARCO, SPAN)

      • Focus: Research, data coordination, registry, capacity building

      • Link: sickleinafrica.org

    • Sickle Cell Warriors, Inc. — International (Non-profit (patient community))

      • Overview: One of the world's largest patient-led digital communities (25,000+ members)

      • Focus: Peer support, education, advocacy, empowerment

      • Link: sicklecellwarriors.com

    • oneSCDvoice — International (Patient platform / network)

      • Overview: International patient & advocacy network (with SCDAA and member orgs)

      • Focus: Curated resources, community, education

      • Link: onescdvoice.com

    • Sickle Cell Society — United Kingdom (National charity)

      • Overview: The UK's only national sickle cell charity, supporting patients since 1979

      • Focus: Helpline, welfare grants, information, advocacy, support groups

      • Link: sicklecellsociety.org

    • Sickle Cell Care Manchester — United Kingdom (Charity)

      • Overview: Manchester charity supporting local people affected by sickle cell

      • Focus: Local support, awareness, community services

      • Link: sicklecellcaremanchester.co.uk

    • SCYSS (Sickle Cell & Young Stroke Survivors) — United Kingdom (Charity)

      • Overview: Supports children, young people and families affected by sickle cell and childhood stroke

      • Focus: Family support, information, childhood stroke awareness

      • Link: scyss.org

    • The Hope Project Scotland — United Kingdom (Charity)

    • FMDT SOS GLOBI — France (Patient federation)

      • Overview: France's national federation of 18 sickle cell & thalassaemia patient associations (~30 yrs)

      • Focus: Patient advocacy, support network, awareness

      • Link: sosglobi.fr

    • APIPD (Assoc. pour l'Information et la Prévention de la Drépanocytose) — France (Patient association)

      • Overview: One of Europe's largest, most active SCD patient orgs - 2,500+ members worldwide (est. 1988)

      • Focus: Information, prevention, advocacy, scientific committee

      • Link: apipd.fr

    • DrepaCare — France / Francophone Africa (Patient association (Loi 1901))

      • Overview: Patient-led association bridging patients and care through digital health empowerment

      • Focus: Education, e-health tools, peer support, awareness

      • Link: drepacare.com

    • Association Suisse Drépano — Switzerland (Patient association)

      • Overview: Lead patient association in French-speaking Switzerland - key for Sikila's launch market

      • Focus: Local clinical alignment, patient support, advocacy (Geneva)

      • Link: orpha.net

    • OSCAR Sandwell — United Kingdom (Charity)

      • Overview: Long-standing West Midlands charity supporting those affected by SCD & thalassaemia (est. 1988)

      • Focus: Counselling, screening, education, support groups

      • Link: oscarsandwell.org.uk

    • OSCAR Birmingham (Org. for Sickle Cell Anaemia Research) — United Kingdom (Charity)

      • Overview: Birmingham's only community SCD & thalassaemia charity

      • Focus: Local support, awareness, education, advocacy

      • Link: oscarbirmingham.org.uk

    • European Sickle Cell Federation — Europe (regional) (Federation)

      • Overview: Network linking sickle cell patient organisations across Europe

      • Focus: Patient advocacy, cross-border collaboration, awareness

      • Link: eurobloodnet.eu

    • Het Sikkelcelfonds (The Dutch Sickle Cell Foundation) — Netherlands (National Foundation)

      • Overview: The primary funding body in the Netherlands for innovative treatment research and nationwide awareness.

      • Focus: Research funding, scientific grants, treatment development, national awareness campaigns

      • Link: hetsikkelcelfonds.nl

    • SAM Deutschland e.V. (Seltene Anämien Deutschland) — Germany (Patient Organization)

      • Overview: The peak patient and family support network in Germany for congenital blood disorders and sickle cell disease.

      • Focus: Patient support network, family counseling, rare anemia advocacy, medical resource coordination

      • Link: seltene-anaemien-deutschland.de

    • National Alliance of Sickle Cell Organisations (NASCO) — India (National non-profit)

      • Overview: India's first national patient-advocacy alliance educating and empowering SCD patients

      • Focus: Patient advocacy, awareness, caregiver empowerment

      • Link: nascoindia.org

    • National Sickle Cell Anaemia Elimination Mission — India (Government programme)

      • Overview: India's national mission to eliminate sickle cell anaemia, focused on tribal health

      • Focus: Screening, treatment, prevention, national policy

      • Link: sickle.nhm.gov.in

    • Sickle Cell Disease Association of America (SCDAA) — United States (National non-profit)

      • Overview: The US national body, with 50+ member organisations across 31 states (est. 1971)

      • Focus: Research, advocacy, education, member network, community service

      • Link: sicklecelldisease.org

    • Sickle Cell Disease Foundation of California — United States (Foundation)

      • Overview: The oldest sickle cell non-profit in the US (est. 1957)

      • Focus: Direct services, education, advocacy, family support

      • Link: scdfc.org

    • Foundation for Sickle Cell Disease Research — United States (Foundation)

      • Overview: Supports patients through research, education and advocacy with Florida clinics

      • Focus: Research, clinical care, education, advocacy

      • Link: fscdrllc.com

    • ASCAA (A Sickle Cell Advocacy Association) — United States (Health organisation)

      • Overview: Connects families, inspires hope and works to improve quality of life

      • Focus: Family connection, advocacy, quality-of-life support

      • Link: ascaa.org

    • Sickle Cell Disease Coalition (SCDC) — United States (Coalition)

      • Overview: A coalition of organisations amplifying the SCD community's voice

      • Focus: Coalition advocacy, awareness, member directory

      • Link: scdcoalition.org

    • Sickle Cell Community Consortium (SC3) — United States (Non-profit network)

      • Overview: National network unifying community-based orgs, patients and advocates (est. 2014)

      • Focus: Patient-voice advocacy, CBO network, community insight

      • Link: sicklecellconsortium.org

    • Sickle Cell 101 — United States / Global (Non-profit (education))

      • Overview: One of the largest digital-first SCD education platforms, connecting the global community

      • Focus: Education, digital engagement, patient data, awareness

      • Link: sc101.org

    • Sickle Cell Foundation of Georgia — United States (Foundation)

      • Overview: One of the oldest, most established US SCD orgs, serving Georgia families

      • Focus: Holistic services, testing, education, advocacy

      • Link: sicklecellga.org

    • Sickle Cell Thalassemia Patients Network (SCTPN) — United States (Non-profit)

      • Overview: Prominent New York/Brooklyn advocacy and support network (est. 1985)

      • Focus: Education, advocacy, care coordination, family support

      • Link: sctpn.net

    • Cayenne Wellness Center & Children's Foundation — United States (Non-profit)

      • Overview: Highly respected California org ensuring expert, comprehensive SCD care

      • Focus: Advocacy, education, comprehensive care navigation

      • Link: cayennewellness.org

    • Sickle Cell Foundation of Minnesota — United States (Foundation)

      • Overview: Strong state-level foundation improving life for those affected by SCD and trait

      • Focus: Education, advocacy, community empowerment, care access

      • Link: sicklecellmn.org

    • Sickle Cell Disease Association of Canada (AAFC) — Canada (National non-profit)

      • Overview: Canada's national body raising awareness and improving diagnosis & treatment (est. 2012)

      • Focus: Awareness, advocacy, provincial chapters, patient support

      • Link: sicklecelldiseasecanada.com

    • Sickle Cell Association of Ontario (SCAO) — Canada (Charity)

      • Overview: Toronto-based provincial charity supporting Ontario families (est. 1981)

      • Focus: Support, resources, community programmes, advocacy

      • Link: sicklecellontario.ca

    • Sickle Cell Awareness Group of Ontario (SCAGO) — Canada (Charity)

      • Overview: One of Canada's most active provincial patient groups

      • Focus: Education, advocacy, patient & family support, awareness

      • Link: sicklecellanemia.ca

    • Society for Inherited & Severe Blood Disorders (SISBDTT) — Trinidad & Tobago (Non-profit)

      • Overview: Supports people with sickle cell, thalassaemia and haemophilia in Trinidad & Tobago

      • Focus: Patient support, awareness, advocacy

      • Link: onescdvoice.com

    • Sickle Cell Unit, UWI (Caribbean Institute for Health Research) — Jamaica (Clinical & research unit)

      • Overview: Global pioneer in sickle cell clinical management and research - adds clinical credibility

      • Focus: Clinical care, research, screening, training

      • Link: uwi.edu

    • Sickle Cell Support Foundation of Jamaica (SCSFJ) — Jamaica (Non-profit foundation)

      • Overview: Volunteer foundation providing social & emotional support and public awareness (relaunched 2015)

      • Focus: Patient & family support, advocacy, awareness

      • Link: onescdvoice.com/scsfj

    • St. Lucia Sickle Cell Association — St Lucia (Association)

      • Overview: Runs a weekly sickle cell clinic and helps neighbouring islands set up associations

      • Focus: Clinical & counselling services, regional support

      • Link: stluciasicklecell.weebly.com

    • Sickle Cell Association of Barbados — Barbados (Association)

      • Overview: Patient association serving the Barbadian sickle cell community

      • Focus: Patient support, awareness, advocacy

      • Link: (Verify contact before publishing)

    • Sickle Cell Association of Grenada — Grenada (Association)

      • Overview: Patient association serving the Grenadian sickle cell community

      • Focus: Patient support, awareness, advocacy

      • Link: (Verify contact before publishing)

    • FENAFAL (Federação Nacional das Associações de Pessoas com Doença Falciforme) — Brazil (National federation)

      • Overview: Brazil's national federation of sickle cell patient associations shaping national SCD policy

      • Focus: Policy advocacy, patient representation, awareness

      • Link: mdpi.com

    • ABADFAL (Assoc. de Pessoas com Doença Falciforme da Bahia) — Brazil (Patient association)

      • Overview: Major Bahia patient-advocacy body; a founder helped shape Brazil's national SCD policy (est. 2001)

      • Focus: Patient advocacy, support, policy influence

      • Link: (Verify contact before publishing)

  • Bahrain Society for Sickle Cell Disease — Bahrain (Patient Society / Advocacy Group)

    • Overview: Highly active patient society collaborating with government to implement gene-editing therapies and lower mortality.

    • Focus: Patient advocacy, government collaboration, advanced therapy access, community health care

    • Link: globalscd.org

    • Australian Sickle Cell Advocacy Inc. (ASCA) — Australia (Peak National Non-profit)

      • Overview: The peak patient advocacy body in Australia managing national support groups and driving awareness.

      • Focus: National support groups, multicultural community awareness, legislative lobbying, clinical trial access

      • Link: aussicklecelladvocacy.org