Our Commitment to the Rare Disease Community

We are committed to advancing and improving the experience of living with a rare disease by making a meaningful difference for the global rare disease community. As part of that commitment, we launched the #RAREis Global Advocate Grant in 2022 to provide critical financial assistance and build equity for the community by fostering growth for advocacy organizations around the world.

The 2023 #RAREis Global Advocate Grant was announced in February in honor of Rare Disease Day and to increase impact and support advocates who are catalysts for rare disease community needs, 50 groups were awarded a one-time $5,000 grant to establish new programs, develop educational resources and expand their current offerings to support their disease communities.

Meet the 2023 Recipients

Horizon Therapeutics received nearly 190 applications, from 33 countries, representing more than 180 different rare diseases. The 50 organizations awarded the grant in 2023 represent 12 countries and focus on supporting 40 different rare diseases. Eight of the advocacy groups are recipients again this year, enabling continued programming from 2022. Meet this year’s recipients:

Country Organization

Rare Disease

United States Avery’s Hope Rare Gastrointestinal Diseases
Beck-Fahrner Syndrome Foundation Beck-Fahrner Syndrome
CACNA1A Foundation, Inc. CACNA1A Related Diseases
Chordoma Foundation* Chordoma
EBF3 HADDS Foundation EBF3 HADD Syndrome
Erdheim-Chester Disease Global Alliance Erdheim-Chester Disease
Foundation for Sarcoidosis Research Sarcoidosis
GACI Global Generalized Arterial Calcification of Infancy
Glanzmann’s Research Foundation, Inc. Glanzmann’s Thrombasthenia
Hypertrophic Olivary Degeneration Association Hypertrophic Olivary Degeneration
Indo US Organization for Rare Diseases Disease Agnostic
Jansen de-Vries Syndrome Foundation* Jasen de-Vries Syndrome
Koolen de-Vries Syndrome Foundation* Koolen de-Vries Syndrome
Lennox-Gastaut Syndrome Foundation* Lennox-Gastaut Syndrome
MEPAN Foundation MEPAN Syndrome
Osteogenesis Imperfecta Foundation Osteogenesis Imperfecta
Pediatric Epilepsy Surgery Alliance Rare Pediatric Epilepsy Diseases
Progressive Familial Intrahepatic Cholestasis Network Progressive Familial Intrahepatic Cholestasis
Project FAVA Fibro-Adipose Vascular Anomaly
Recurrent Respiratory Papillomatosis Foundation Recurrent Respiratory Papillomatosis
SHINE Syndrome Foundation* DLG4, PSD-95 and SHINE Syndrome
Soft Bones, Inc. Hypophosphatasia
Spinal Leak CSF Foundation Intracranial Hypotension, Spinal Cerebrospinal Fluid Leak
TANGO2 Research Foundation* TANGO2 Related Deficiency Disorders
TBX4Life TBX4 Syndrome
The E.WE Foundation* Edwards Syndrome, commonly known as Trisomy 18
The Rory Belle Foundation NARS1 Related Diseases
Belgium Alliance for Pulmonary Hypertension (AfPH) Pulmonary Hypertension
European Huntington Association Huntington’s Disease
International Patient Organisation for Primary Immunodeficiencies Primary Immunodeficiencies
Brazil Aliança Distrofia Brasil Muscular Dystrophy
Brazilian Association of Prader-Willi Syndrome Prader-Willi Syndrome
Instituto Atlas Biosocial Disease Agnostic
Bulgaria Bulgarian Society of the Patients with PH Pulmonary Hypertension
England International Gaucher Alliance Gaucher Related Diseases
Ghana Rare Disease Ghana Initiative Disease Agnostic
Ireland DEBRA Ireland Epidermolysis Bullosa
Northern Ireland Rare Disease Partnership Disease Agnostic
Usher Syndrome Ireland Usher Syndrome
Italy Associazione Italiana Sindrome di Beckwith-Wiedemann ODV Beckwith-Wiedemann Syndrome
Associazione Sindrome di Noonan e RASopatie ODV Noonan Syndrome and RASopathies Related Diseases
ConRett ETS Rett Syndrome
SCN2A Italia Famiglie In Rete APS Medical Conditions Related to the Gene SCN2A
Uniti per la P.I.P.O. ETS Chronic Intestinal Pseudo-Obstruction
Netherlands Nederlandse Leverpatienten Vereniging Rare Liver Diseases
NF Patients United – Global Network of Neurofibromatosis Patient Organizations Neurofibromatosis Related Diseases
Philippines Philippine Society for Orphan Disorders Disease Agnostic
Poland Healthcare Education Institute* Disease Agnostic
Ukraine NGO Rare Diseases of Ukraine Disease Agnostic
PNH Ukraine Paroxysmal Nocturnal Hemoglobinuria

*indicates repeat recipients

Learn More

The #RAREis Global Advocate Grant is part of Horizon’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 Horizon’s disease states. All funds will be used in the year provided and no healthcare providers will be receiving benefits from this grant. Visit www.rareiscommunity.com/Grant for more information and stay tuned for updates when applications re-open for the #RAREis Global Advocate Grant in 2024.

To learn about last year’s recipients, read this blog: Celebrating the #RAREis Global Advocate Grant Recipients.

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