Horizon Therapeutics plc Announces 2023 #RAREis Global Advocate Grant Recipients
27 Julho 2023 - 9:00AM
Business Wire
Fifty patient advocacy organizations from
around the world awarded a $5,000 grant to address unique
challenges faced in rare disease communities
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.
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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
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