Our Commitment to Rare

We are committed to advancing and improving the experience of living with a rare disease by making a meaningful difference for the people and communities we serve around the world. As part of that commitment, this year we launched and announced the #RAREis Global Advocate Grant, a program designed to support the rare disease community by providing financial assistance to U.S. and global patient advocacy groups working to advance, educate and address the needs of the community.

The 2022 Recipients

With more than 7,000 known rare diseases impacting more than 400 million people worldwide, there are thousands of organizations doing the important work of helping people living with a rare disease to access education, engage with peers and others impacted by rare disease and seek the best possible care. We are thrilled to announce that these 30 organizations are recipients of the 2022 #RAREis Global Advocate Grant. Each organization received a one-time $5,000 grant, for a total of $150,000 contributed to support programs and disease education initiatives to address the needs of the rare disease community.

Country or Region Organization Rare Disease
United States ALD Alliance Adrenoleukodystrophy (ALD)
Chordoma Foundation Chordoma (a rare cancer)
SHINE Syndrome Foundation DLG4, PSD-95 and SHINE Syndrome
The E.WE Foundation Edwards Syndrome, commonly known as Trisomy 18
The Life Raft Group Gastrointestinal Stromal Tumors (GIST)
Hope for HIE Hypoxic Ischemic Encephalopathy (HIE)
11q Research and Resource Group Jacobsen Syndrome and 11q disorders
Jansen de Vries Syndrome Foundation Jansen De Vries Syndrome (JdVS)
Koolen-de Vries Syndrome Foundation Koolen-de Vries Syndrome
Chelsea’s Hope Lafora Children Research Fund Lafora disease (an inherited myoclonus epilepsy syndrome)
LGS Foundation Lennox-Gastaut Syndrome
Malan Syndrome Foundation Malan Syndrome
United MSD Foundation Multiple Sulfatase Deficiency (MSD)
Rays for Rare Pediatric rare diseases
Global Foundation for Peroxisomal Disorders Peroxisomal Disorders
Prader-Willi Syndrome Association USA Prader-Willi Syndrome
PTEN Hamartoma Tumor Syndrome Foundation PTEN Hamartoma Tumor Syndrome (PHTS)
RASopathies Network RASopathy Syndromes
The SHANK2 Foundation SHANK2 genetic disorders
Virginia Sickle Cell Network Sickle Cell Disease (SCD)
The Stiff Person Syndrome Research Foundation Stiff person syndrome (SPS)
TANGO2 Research Foundation TANGO2 disorders (metabolic encephalopathy and arrhythmias)
Brazil Fundação Altino Ventura Rare vision disorders
Colombia Asociación Colombiana de Pacientes con Enfermedades de Depósito Lisosomal (ACOPEL) Lysosomal Storage Diseases
Switzerland AGO2 Association

 

AGO2, Lessel-Kreienkamp, Leskres syndrome
Poland Healthcare Education Institute

 

Rare diseases
Nigeria Foundation for Neuromuscular Support Nigeria

 

Muscular Dystrophy (MD)
Austria/Asia Pacific SCN2A Asia-Pacific

 

SCN2A (Genetic epilepsy disorder / developmental and epileptic encephalopathy)
United Kingdom Action for XP

 

Xeroderma Pigmentosum (XP)
Uganda Raising Hope International Friends

 

Sickle Cell Disease (SCD)

 

Learn More

The #RAREis Global Advocate Grant was created by Horizon Therapeutics to support rare disease advocacy groups in the U.S. and globally to address the needs of the rare disease community directly. 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 2023.

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