-- The new program and website are designed to create conversations that will lead to new resources to support diversity, equity, inclusion and allyship within the rare disease community --
-- #RAREis webcast conversation with The Akari Foundation, Amigos Múltiplos, Child Neurology Foundation and The Sumaira Foundation to be held on Feb. 28 at 8:55 a.m. CT --
Horizon Therapeutics plc (Nasdaq: HZNP) today announced the launch of the #RAREis Representation program, which expands Horizon’s #RAREis program to support advancing global equity in the rare disease community. The program is centered around a new section of the #RAREis website where individuals are invited to provide feedback via a short survey on key issues related to rare disease equity, which will be used to inform long-term programming, toolkits and resources for the rare disease community.
The rare disease community comprises an estimated 400 million people worldwide living with a rare disease and millions more impacted as parents, siblings, extended family members, caregivers and friends. People living with rare diseases face many challenges, including access to diagnosis, appropriate care and approved treatments. For many in the community, barriers can impact their rare disease experience and their care based on the social determinants of health, among other factors. Throughout 2022, #RAREis will be sharing diverse stories, providing resources and hosting community conversations to drive action.
“During the past several years Horizon has been engaging with the rare disease community to better understand the barriers people with rare diseases are facing when it comes to representation and inclusion,” said Matt Flesch, vice president, communications and patient advocacy, Horizon Therapeutics.
“We held a patient advocacy summit on diversity, equity and inclusion last year, and have been actively engaging and supporting organizations who are leading this work as part of our long-term commitment to addressing health inequalities. The #RAREis Representation program will gather additional feedback and insights directly from the global rare disease community that will help guide future programs that advance and improve inclusivity and equity in rare disease.”
Horizon will also be hosting a webinar on Rare Disease Day to foster conversation around advancing global equity. The global webinar, “#RAREis Representation: Discussing the Importance of Diversity, Equity, Inclusion and Allyship in the Global Rare Disease Community,” will be moderated by Vikram Karnani, executive vice president, president international, Horizon Therapeutics and will discuss diversity, equity, inclusion and allyship within the rare disease community. Registration for the webinar is available here.
“Living with a rare disease can be an isolating experience, especially when you come from a diverse background,” said Sumaira Ahmed, founder and executive director, The Sumaira Foundation. “It’s imperative that communities of color are represented and the issues impacting diverse groups are a part of the conversation around rare disease equity. I’m excited to shine a light on the need for greater inclusion in the rare disease community.”
Rare Disease Day Community Support
Horizon is also engaging with the rare disease community through global Rare Disease Day awareness efforts. Horizon is the title sponsor for Rare Disease Week on Capitol Hill, hosted by the EveryLife Foundation for Rare Diseases. Horizon will co-sponsor a panel with Rare Disease Diversity Coalition partners along with the Black Women’s Health Imperative around the importance of knowing your family’s history around rare disease. Horizon has sponsored Rare Diseases Ireland’s Raise A Toastie campaign to raise awareness for those living with a rare disease in Ireland.
As a further sign of support for the rare disease community, Horizon’s U.S. headquarters in Deerfield, Illinois and global headquarters in Dublin, Ireland will be lit in pink, purple, green and blue, the official colors of Rare Disease Day. The Chicago Cubs will also call attention to Rare Disease Day by lighting Gallagher Way in Rare Disease Day colors and through messaging on the Wrigley Field Marquee. And, in partnership with Willis Towers Watson (Nasdaq: WLTW) and Willis Tower, the Willis Tower antennas in Chicago will also be lit in pink and purple to signify Horizon’s commitment to the rare disease community.
This new #RAREis Representation programming is in addition to continued support for other rare disease programming supporting rare disease equity by Horizon through its #RAREis program, such as the #RAREis Scholarship Fund and the #RAREis Adoption Fund.
About Rare Disease Day
Rare Disease Day is marked globally every year on the last day of February to underscore the nature of rare diseases and what patients face. The National Organization for Rare Disorders (NORD) is the sponsor of Rare Disease Day in the United States. For more information about Rare Disease Day in the U.S., go to rarediseaseday.us. For information about global activities, go to rarediseaseday.org. To search for information about rare diseases, visit NORD’s website, rarediseases.org.
About Willis Tower
Located at 233 S. Wacker Drive in the heart of downtown Chicago, Willis Tower is an urban destination and state-of-the-art workplace that welcomes prominent businesses ranging from law firms to large airline corporations to insurance companies. Standing 1,450 feet and 110 stories tall, Willis Tower has the region's most breathtaking views of Chicago and Lake Michigan. Willis Tower's Skydeck attracts more than 1.7 million visitors each year with its inviting hospitality and memorable experiences. In early 2017, Blackstone and EQ Office announced plans for the biggest restorative transformation project in the building's 47-year history. The renovation project now underway includes the addition of Catalog, a more than 300,000 square-feet curated dining, entertainment and community experience, as well as a 30,000 square-feet outdoor terrace, evolving at the base of the tower.
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.
Horizon is 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.