Horizon Pharma plc (NASDAQ:HZNP), a biopharmaceutical company focused on improving patients’ lives by identifying, developing, acquiring and commercializing differentiated and accessible medicines that address unmet medical needs, announced the launch of RAREis™, an initiative that aims to elevate the voices, faces and experiences of people living with rare diseases, as well as Horizon’s programs and resources for the rare disease community. The launch of RAREis coincided with international Rare Disease Day®, a global observance recognizing the approximately 350 million people worldwide living with a rare disease.
The RAREis campaign is anchored by an Instagram page that will showcase photos of people touched by rare disease and capture elements of their patient, caregiver or advocate experience. In addition to the photos that Horizon will be sharing on its Instagram page, people throughout the rare disease community are encouraged to create their own RAREis photos and share via their preferred social media platform – whether Instagram, Facebook and/or Twitter – using the hashtag #RAREis.
“Rare is being courageous, tenacious and joyous,” said Cristina, mother of a child living with chronic granulomatous disease, a rare disease that hinders the body’s ability to fight infections. “Living with a rare disease to us means not only hoping for a cure in the future but also living life joyfully in the now.”
The Instagram page will also elevate Horizon’s rare disease offerings and partnerships, including support programs for families with special needs, scholarships and disease education initiatives.
“The RAREis initiative will elevate the tremendous stories of resilience over adversity that we’ve heard from our interactions with patients, their families and the more than 30 rare disease organizations that we interact with at hundreds of events around the world,” said Timothy P. Walbert, chairman, president and chief executive officer, Horizon Pharma plc. “This effort is part of our long-term goal to be a leading rare disease company, providing support that goes beyond what is typically expected from a biopharmaceutical company.”
There are approximately 7,000 different types of rare diseases and only five percent have treatments available. In the United States, a condition is considered "rare" if it affects less than 200,000 people while other countries have different definitions based on population.1 Horizon makes medicines available for rare diseases that are particularly devastating and isolating, affecting as few as 500 people in the United States and 2,000 worldwide
The Aromatic Amino Acid Decarboxylase deficiency, Professional and Family Community, Join the #RAREis Campaign at their Nov 2018 Conference...
Dr David Gaze
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