Empowering Change and Elevating Voices

Empowering Change and Elevating Voices: 2024 #RAREis Global Advocate Grant

Supporting 75 global patient advocacy groups through a $5,000 grant to address the challenges and expand opportunities within rare disease communities.

September 3, 2024 by #RAREisTeam

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

Children’s Tumour Foundation of Australia

Neurofibromatosis

The Mito Foundation

Mitochondrial Disease

NF Patients United

Neurofibromatosis

Alliance for Pulmonary Hypertension (AfPH) 

Pulmonary hypertension, pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension.

European Huntington Association

Huntington’s Disease

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

Hand in Hand Association

Congenital Upper Limb Difference (CULD)

Federación Colombiana de Enfermedades Raras (FECOER) 

Disease Agnostic

HAE Junior

Hereditary Angioedema (HAE)

Global Porphyria Advocacy Coalition (GPAC) 

Porphyria

Norio Centre of Rare Diseases 

Disease Agnostic

MARFANS 

Marfan Syndrome

Association Française Atrésie Oesophage (AFAO) 

Esophageal Atresia

Let’s Cure ACC 

Adrenal Cancer

Alliance Maladies Rares 

Disease Agnostic

Usher Syndrome Ireland 

Usher Syndrome

Debra Ireland 

Epidermolysis Bullosa

Healthcare Education Institute 

Disease Agnostic

National Organisation for Rare Diseases of Serbia 

Disease Agnostic

Retina South Africa 

Rare retinal conditions: Stargardt Disease, Usher Syndrome, Cone Rod Dystrophy, Leber Congenital Amaurosis, and related rare retinal vision loss conditions

MaRaVal – maladies rares valais 

Disease Agnostic

Raising Hope International Friends 

Sickle Cell Disease

PNH Ukraine 

Paroxysmal nocturnal hemoglobinuria

NGO “Rare Diseases of Ukraine” 

Disease Agnostic

Charitable Foundation Orphanni Synytsi 

Disease Agnostic

Encephalitis International 

Encephalitis

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

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.