Horizon Therapeutics plc Announces 2023 #RAREis Global Advocate Grant Recipients
HZNP: Horizon Therapeutics Announces 50 Awardees for 2023 #RAREis Global Advocate Grant, Awarding $5,000 to Rare Disease Patient Advocacy Organizations
07/27/2023 - 08:00 AM
Fifty patient advocacy organizations from around the world awarded a $5,000 grant to address unique challenges faced in rare disease communities
DUBLIN --(BUSINESS WIRE)--
Horizon Therapeutics plc (Nasdaq: HZNP) today announced the 50 awardees from around the world selected to receive the 2023 #RAREis™ Global Advocate Grant. These rare disease patient advocacy organizations will receive a one-time grant of $5,000 to establish new programs, develop educational resources and expand their current offerings to support their disease communities.
“At Horizon, our inclusive approach to supporting patient advocacy groups helps these organizations address the most critical needs affecting their rare disease community,” said Matt Flesch, vice president, communications and patient advocacy, Horizon. “We learn from every rare disease organization we interact with and are inspired by the diversity of initiatives advancing education, treatments and more. We find great meaning and purpose in this opportunity to help many different organizations – none of whom operate within any of the disease areas where Horizon makes medicines available – advance their mission.”
The 2023 #RAREis Global Advocate Grant program was announced in February during Rare Disease Day. Horizon 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.
2023 Awardees:
Aliança Distrofia Brasil
Alliance for Pulmonary Hypertension
Associazione Italiana Sindrome di Beckwith-Wiedemann ODV
Associazione Sindrome di Noonan e RASopatie ODV
Avery's Hope
Beck-Fahrner Syndrome Foundation
Brazilian Association of Prader-Willi Syndrome
Bulgarian Society of the Patients with PH
CACNA1A Foundation, Inc.
Chordoma Foundation
ConRett ETS
DEBRA Ireland
EBF3 HADDS Foundation
European Huntington Association
Erdheim-Chester Disease Global Alliance
Foundation for Sarcoidosis Research
GACI Global
Glanzmann's Research Foundation, Inc.
Healthcare Education Institute
Hypertrophic Olivary Degeneration Association
Indo US Organization for Rare Diseases
Instituto Atlas Biosocial
International Gaucher Alliance
International Patient Organisation for Primary Immunodeficiencies
Jansen de-Vries Syndrome Foundation
Koolen de-Vries Syndrome Foundation
Lennox-Gastaut Syndrome Foundation
MEPAN Foundation
Nederlandse Leverpatienten Vereniging
NF Patients United - Global Network of Neurofibromatosis Patient Organizations
NGO Rare Diseases of Ukraine
Northern Ireland Rare Disease Partnership
Osteogenesis Imperfecta Foundation
Pediatric Epilepsy Surgery Alliance
Progressive Familial intrahepatic Cholestasis Network
Philippine Society for Orphan Disorders, Inc.
Paroxysmal Nocturnal Hemoglobinuria Ukraine
Project FAVA
Rare Disease Ghana Initiative
Recurrent Respiratory Papillomatosis Foundation
SCN2A Italia Famiglie In Rete APS
SHINE Syndrome Foundation
Soft Bones, Inc.
Spinal Leak CSF Foundation
TANGO2 Research Foundation
TBX4Life
The E.WE Foundation
The Rory Belle Foundation
Uniti per la P.I.P.O. ETS
Usher Syndrome Ireland
Applications are evaluated based on the organization’s work to support the rare disease community and how the grant would further their ability to deliver on their missions and goals. For more information about #RAREis , the Global Advocate Grant and to view the full list of the recipient organizations, click here .
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. The Global Advocate Grant program launched in 2022 to provide critical financial assistance and build equity for the rare disease community by fostering growth for advocacy organizations around the world.
About #RAREis
In February of 2017, Horizon launched the #RAREis program aimed at elevating the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources for the rare disease community. The program is anchored by an Instagram page and website that showcases photos and stories of people touched by rare disease and captures elements of their patient, caregiver or advocate experience. To learn more, visit the #RAREis Instagram and Facebook page and visit the website at www.RAREisCommunity.com .
About Horizon
Horizon is a global biotechnology company focused on the discovery, development and commercialization of medicines that address critical needs for people impacted by rare, autoimmune and severe inflammatory diseases. Our pipeline is purposeful: We apply scientific expertise and courage to bring clinically meaningful therapies to patients. We believe science and compassion must work together to transform lives. For more information on how we go to incredible lengths to impact lives, visit www.horizontherapeutics.com and follow us on Twitter , LinkedIn , Instagram and Facebook .
View source version on businesswire.com: https://www.businesswire.com/news/home/20230727028936/en/
U.S. Media:
Michelle Rivas
Senior Manager, Communications
media@horizontherapeutics.com
Ireland Media:
Eimear Rigby
Associate Director, Communications
erigby@horizontherapeutics.com
Source: Horizon Therapeutics plc
What is the 2023 #RAREis Global Advocate Grant?
The 2023 #RAREis Global Advocate Grant provides a one-time $5,000 grant to rare disease patient advocacy organizations from around the world to establish new programs, develop educational resources, and expand their current offerings.
How many organizations were awarded the grant?
50 rare disease patient advocacy organizations from 12 countries were awarded the grant in 2023.
How many applications were received for the grant?
Horizon received nearly 190 applications from 33 countries, representing more than 180 different rare diseases.
What is the evaluation criteria for the grant applications?
Applications are evaluated based on the organization’s work to support the rare disease community and how the grant would further their ability to deliver on their missions and goals.