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Horizon Therapeutics plc Ranks First in Overall Corporate Reputation by Rare Disease Patient Advocacy Groups

Horizon Therapeutics plc (Nasdaq: HZNP) today announced that it ranked first in overall corporate reputation among rare disease patient groups around the world who were familiar with the company. Rare disease patient groups who worked with Horizon also ranked the company first in 10 of the 14 indicators including patient centricity, patient information, integrity, access to medicines, relationships (communications, long-term support and ease of working) and services “beyond the pill.” The results are based on PatientView’s 2022 global “Corporate Reputation of Pharma” survey of 426 patient groups who evaluated 34 pharmaceutical and biotechnology companies.

“We are honored by the feedback that rare disease patient advocacy groups provided within the PatientView report,” said Matt Flesch, vice president, patient advocacy and product communications, Horizon. “Our approach to patient advocacy is to participate, listen and learn, knowing that rare disease patient groups are usually the main catalyst for progress, driving awareness and education, building community and advancing research toward treatments and cures. From the programs that we support to the initiatives that we create; our belief is that meaningful and appropriate collaboration with patient advocacy groups is core to all our work at Horizon.”

In the PatientView report summarizing survey results from rare disease groups, 91 rare disease patient advocacy groups said they were familiar with Horizon and 59 said they worked with the company. Fifty-six percent of groups familiar with Horizon were from the United States, with the rest headquartered in other areas around the world – reflecting Horizon’s recent global expansion as well as its approach to supporting a wide range of patient advocacy organizations.

In previous PatientView results released in the first half of 2023, Horizon ranked second in overall corporate reputation and first in patient centricity and integrity among all patient advocacy groups around the world who worked with the company (not just rare disease groups), and first in overall corporate reputation among patient advocacy groups in the United States.

Select highlights from 2022 advocacy engagement and collaboration include:

  • Holding the first Rare Autoimmune Emerging Leaders' Summit, bringing together 26 patient advocate leaders in the rare and autoimmune space to provide important connections and a forum for groups to learn from each other.
  • Bringing together patients, care partners, and patient advocacy leaders to Horizon’s U.S. headquarters to discuss current challenges the neuromyelitis optica spectrum disorder (NMOSD) community is facing and to brainstorm on novel ideas and opportunities to support the NMO community.
  • Supporting art therapy programs for multiple rare disease communities to foster community and understanding.
  • Hosting the first-ever TED Mobile Exhibit in Atlanta, Georgia, providing TED resources and information to attendees. This was part of Horizon’s ongoing effort to bring education and awareness to underserved communities.
  • Enhancing Horizon’s global, disease-agnostic #RAREis program and its initiatives:
    • Global Advocate Grant: Awarding 30 $5,000 grants supporting the rare disease community by providing financial assistance to global patient advocacy groups working to advance, educate and address the needs of the community. For 2023, this has been increased to 50 scholarships.
    • Scholarship Fund: In partnership with the EveryLife Foundation for Rare Diseases awarding a one-time $5,000 educational scholarship to adults living in the U.S. with rare diseases; 81 scholarships were awarded in 2022.
    • Adoption Fund: In partnership with Gift of Adoption, providing financial support for 54 children living with rare diseases to be adopted.

About Horizon

Horizon is a global biotechnology company focused on the discovery, development and commercialization of medicines that address critical needs for people affected 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 and follow us on Twitter, LinkedIn, Instagram and Facebook.


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