Horizon Therapeutics plc (Nasdaq: HZNP) today announced the launch of a month-long virtual storytelling experience to elevate the diverse voices and faces of the rare disease community and benefit Make-A-Wish Mid-Atlantic and Make-A-Wish Canada. The #RAREis photobooth adds to a global commitment to helping grant the wishes of children with life-threatening rare diseases and provide moments of joy during a challenging time.
Today, there are more than 7,000 known rare diseases impacting over 400 million people worldwide. Each story is unique, and Horizon aims to elevate and unite the community through shared experiences, resources and focus on delivering innovation in rare disease. This year the company has launched the virtual #RAREis photobooth, where participants can share who they are as well as what rare means to them.
For each photo submitted Horizon will donate $50 (up to $20,000), providing up to $10,000 to Make-A-Wish Canada and $10,000 to Make-A-Wish Mid-Atlantic to grant two wishes to children living with rare diseases. The #RAREis photobooth complements ongoing #RAREis signature programs, including the #RAREis Playlist, #RAREis Adoption Fund and #RAREis Scholarship Fund.
“As a global partner, we are committed to advancing research, driving innovation, and providing education and resources for the rare disease community,” said Tim Walbert, chairman, president and chief executive officer, Horizon. “Understanding each story and the shared experiences allows us to better address unmet needs and create a meaningful difference in the lives of people living with and caring for those with a rare disease.”
Horizon’s #RAREis program aims to unite the community through shared experiences and elevate the unique stories of families impacted by rare disease. The support of Make-A-Wish begins a global chapter for #RAREis personal stories, resources and programs. Since 2019, Horizon has donated $180,000, which is enough to grant 18 life-changing wishes. In addition, Horizon has committed $25,000 to Make-A-Wish Ireland for 2021.
“Rare disease impacts many of our families and this donation will help provide life-changing experiences that they will cherish for a lifetime,” said Susan O’Dwyer, chief executive at Make-A-Wish Ireland. “Horizon’s support will help bring the wishes of seriously ill children to life – creating hope, strength and lasting happy memories.”
As a further sign of support for the rare disease community, this weekend 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. 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 in Illinois and to address unmet patient needs.
“We are honored to assist in calling attention to Rare Disease Day and the significant need for treatment options facing the millions of Americans living with a rare disease,” said Scott McMahon, life sciences practice leader of the Midwest, WTW. “With this ionic Chicago skyscraper being our Midwest Regional Headquarters, we are proud to share in the name and awareness that this will bring to the rare disease community.”
Horizon will also partner with Uplifting Athletes in early March, an organization that develops champions for rare diseases through sport, to bring together the rare disease and athletic communities to increase awareness and ultimately raise funds that will further research for new therapies to address the critical unmet needs in rare disease.
Through Uplifting Athletes’ Reps for Rare Diseases, NFL Draft prospects are provided an opportunity to give back and support the rare disease community by dedicating their performance in one event – bench press, vertical jump or broad jump – at their school’s official pro day to raise funds for rare disease research and awareness initiatives. For every athlete participating, Horizon will match donations up to $35,000 through its #RAREis program, which provides individuals and families living with rare disease access to resources that connect, inform and educate as they navigate their daily lives.
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 US, 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.
Make-A-Wish creates life-changing wishes for children with critical illnesses. Founded in 1980, Make-A-Wish is the world’s leading children’s wish-granting organization, having granted more than 500,000 wishes in nearly 50 countries worldwide. Together with generous donors, supporters, staff and more than 40,000 volunteers around the globe, Make-A-Wish delivers hope and joy to children and their families when they need it most. Make-A-Wish aims to bring the power of wishing to every child with a critical illness because wish experiences can help improve emotional and physical health. For more information about Make-A-Wish America, visit wish.org, and for more information about Make-A-Wish International, visit worldwish.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 breath-taking 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 researching, developing and commercializing medicines that address critical needs for people impacted by rare and rheumatic 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, please visit www.horizontherapeutics.com, follow us on Twitter, LinkedIn, Instagram and Facebook.
Sr. Manager, Product Communications