Support for the Rare Disease Community through the Global Advocate Grant
With more than 10,000 known rare diseases impacting more than 400 million people worldwide, we are committed to elevating the voices, faces and unique perspectives of people living with rare diseases. Through the #RAREis Global Advocate Grant, launched in 2022, we aim to provide critical financial assistant to help build equity for rare disease communities to foster growth, empowerment and opportunities globally.
This year, Amgen received nearly 400 applications, from 57 countries, representing more than 350 different rare diseases. The 75 organizations selected to receive the grant represent 18 countries and more than 60 unique rare diseases. Nearly a third of the organizations are repeat recipients this year, enabling continued programming that may have started in 2022 or 2023.
Learn more about the 2024 awardees below and many congratulations to all organizations; we’re honored to be supporting your excellent work within the rare disease community!
Meet the 2024 Recipients
|
Country |
Organization |
Rare Disease |
| Australia | Children’s Tumour Foundation of Australia | Neurofibromatosis |
| The Mito Foundation | Mitochondrial Disease | |
| Austria | NF Patients United | Neurofibromatosis |
| Belgium | Alliance for Pulmonary Hypertension (AfPH) | Pulmonary hypertension, pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension. |
| European Huntington Association | Huntington’s Disease | |
| Brazil | Instituto Atlas Biosocial | Disease Agnostic |
| Associação Angelman Brasil | Angelman Syndrome | |
| Instituto DEAF1 | Vulto-Van Silfout-de Vries Syndrome (VSVS) and Neurodevelopmental disorder with hypotonia and impaired expressive language and with or without seizures (NEDHELS) | |
| Associação Brasileira do Tumor Desmóide | Desmoid Tumor | |
| China | Hand in Hand Association | Congenital Upper Limb Difference (CULD) |
| Columbia | Federación Colombiana de Enfermedades Raras (FECOER) | Disease Agnostic |
| Czechia | HAE Junior | Hereditary Angioedema (HAE)
|
| England | Global Porphyria Advocacy Coalition (GPAC) | Porphyria |
| Finland | Norio Centre of Rare Diseases | Disease Agnostic |
| France | MARFANS | Marfan Syndrome |
| Association Française Atrésie Oesophage (AFAO) | Esophageal Atresia | |
| Let’s Cure ACC | Adrenal Cancer | |
| Alliance Maladies Rares | Disease Agnostic | |
| Ireland | Usher Syndrome Ireland | Usher Syndrome |
| Debra Ireland | Epidermolysis Bullosa | |
| Poland | Healthcare Education Institute | Disease Agnostic |
| Serbia | National Organisation for Rare Diseases of Serbia | Disease Agnostic |
| South Africa | Retina South Africa | Rare retinal conditions: Stargardt Disease, Usher Syndrome, Cone Rod Dystrophy, Leber Congenital Amaurosis, and related rare retinal vision loss conditions |
| Switzerland | MaRaVal – maladies rares valais | Disease Agnostic |
| Uganda | Raising Hope International Friends | Sickle Cell Disease |
| Ukraine | PNH Ukraine | Paroxysmal nocturnal hemoglobinuria |
| NGO “Rare Diseases of Ukraine” | Disease Agnostic | |
| Charitable Foundation Orphanni Synytsi | Disease Agnostic | |
| United Kingdom | Encephalitis International | Encephalitis |
| USA | Aicardi Goutieres Syndrome Advocacy Organization (AGSAA) | Aicardi-Goutieres Syndrome |
| ALD Alliance | ALD (adrenoleukodystrophy) and RUSP diseases | |
| Association for Creatine Deficiencies | Cerebral Creatine Deficiency Syndromes: CTD, GAMT, and AGAT | |
| ASXL Rare Research Endowment Foundation | ASXL-related disorders (ASXL1/Bohring-Opitz Syndrome, ASXL2/Shashi-Pena Syndrome, ASXL3/Bainbridge-Ropers Syndrome) | |
| Autoinflammatory Alliance | Rare Autoinflammatory Diseases | |
| Avery’s Hope | Pediatric gastrointestinal diseases and disorders | |
| CACNA1A Foundation, Inc. | CACNA1A-related neurodevelopmental diseases | |
| CLOVES Syndrome Community | CLOVES Syndrome | |
| Courageous Parents Network, Inc. (CPN) | Disease Agnostic | |
| CSNK2A1 FOUNDATION | Okur-Chung Neurodevelopmental Syndrome | |
| Cure VCP Disease, Inc. | VCP-associated multisystem proteinopathy (MSP-1), aka VCP disease | |
| CureGRIN Foundation | GRI Disorders (GRIN1, GRIN2A, GRIN2B, GRIN2D, GRIN3A, GRIA1, GRIA2, GRIA3, GRIA4, GRIK2, GRIK5, GRID1, and GRID2) | |
| FD/MAS Alliance | Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) | |
| Glanzmann’s Research Foundation | Glanzmann’s Thrombasthenia | |
| HCU Network America | Homocystinurias (Classical HCU, Cobalamin Disorders & Severe MTHFR) | |
| Hope for HIE | Neonatal Hypoxic Ischemic Encephalopathy | |
| Hope for Hypothalamic Hamartomas | Hypothalamic Hamartomas | |
| Hope in Focus | Leber congenital amaurosis | |
| Hypertrophic Olivary Degeneration Association (HODA) | Hypertrophic Olivary Degeneration | |
| Indo US Organization for Rare Diseases (IndoUSrare) | Disease Agnostic | |
| International Sacral Agenesis/Caudal Regression Association | Sacral agenesis, also called caudal regression syndrome | |
| Jett Foundation, Inc. | Duchenne Muscular Dystrophy | |
| KAT6 Foundation | KAT6A and KAT6B genetic syndromes | |
| Kinslow TUBB4A Foundation Inc | TUBB4A-related Leukodystrophy | |
| Lennox-Gastaut Syndrome (LGS) Foundation | Lennox-Gastaut Syndrome (LGS) | |
| Les Turner ALS Foundation | Amyotrophic lateral sclerosis (ALS) | |
| Lipodystrophy United | Lipodystrophy (all types) | |
| MAC Angels Foundation | ALS | |
| Mowat Wilson Syndrome Foundation | Mowat Wilson Syndrome | |
| Myhre Syndrome Foundation | Myhre Syndrome | |
| Prader-Willi Syndrome Association USA | Prader-Willi Syndrome (PWS) | |
| Project FAVA | Fibro-adipose vascular anomalies (FAVA) | |
| PTEN Hamartoma Tumor Syndrome Foundation | PTEN Hamartoma Tumor Syndrome | |
| RareAI Institute | Single gene defect rare diseases (i.e. Duchenne Muscular Dystrophy) | |
| Sisters’ Hope Foundation | ALSP | |
| TANGO2 Research Foundation | TANGO2 Deficiency Disorder (TDD), TANGO2 related disorder, TANGO2 disease | |
| Team Telomere | Telomere Biology Disorders | |
| The Cheyanna Foundation for Children a.k.a Cheyanna’s Champions 4 Children (CC4C) | Disease Agnostic | |
| The E.WE Foundation | Trisomy 18 (Edwards Syndrome) | |
| The EHE Foundation | Epithelioid hemangioendothelioma (EHE) | |
| The Global Foundation for Peroxisomal Disorders | Peroxisomal Disorders | |
| The Jansen de Vries Syndrome Foundation | Jansen de Vries Syndrome (JdVS) | |
| The Rory Belle Foundation | NARS1 Disorder | |
| The SPATA Foundation | SPATA5 and SPATA5L1 Related Genetic Disorders | |
| United MSD Foundation | Multiple Sulfatase Deficiency (MSD) | |
| Upequity | Disease Agnostic |
About the Global Advocate Grant Program
The #RAREis Global Advocate Grant is part of Amgen’s #RAREis program, which is committed to improving the experience of living with a rare disease by providing support to many organizations that offer crucial programs and services for people living with rare diseases. Recipient organizations must be considered a non-profit organization focused on supporting the rare disease community outside of Amgen’s disease states. All funds will be used in the year provided and no healthcare providers will be receiving benefits from this grant.
To learn about the 2022 and 2023 recipients, read these blogs: Celebrating the #RAREis Global Advocate Grant Recipients and Commemorating the 2023 #RAREis Global Advocate Grant Recipients.