Patient Advocacy Overview
When patients benefit, everyone benefits.
It’s a belief that we hold at our core and runs through everything we do. And it’s why we partner with more than 50 patient advocacy groups, from large global organizations to small, local groups, addressing the needs of people living with common disorders to those struggling with very rare diseases.
Each year, our more than 1,000 employees take part in hundreds of advocacy events around the world supporting people living with diseases that our medicines help treat, including rare disorders and rheumatic conditions. Through these interactions, we’re able to listen, learn and support the creation of new resources that address the most pressing unmet needs.
The following are just a few examples of our advocacy efforts:
In February of 2017, we launched RAREis™, an initiative that aims to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources for the rare disease community. The campaign is anchored by an Instagram page that showcases photos of people touched by rare disease and captures elements of their patient, caregiver or advocate experience.
To learn more, read the RAREis campaign’s inaugural press release and watch the video below.
Created in collaboration with people living with a urea cycle disorder (UCD), their families, caregivers and healthcare professionals, UCD in Common offers supportive, educational and interactive resources.
A website and Facebook page provide shareable videos and lifestyle tips as well as low-protein recipes for people living with a UCD who must restrict their protein intake because of its effect of elevating ammonia levels.
“UCD in Common is a labor of love for those of us who collaborated with Horizon on its creation,” said Guadalupe M., mother of a young daughter with a UCD and one of 13 members of Horizon Pharma’s UCD patient and caregiver working group.
“In working together with other families, we noticed many challenges we had in common at different stages of our journey. As the initiative evolves, we’re excited to hear from more families so that we can find strength through our individual experiences and inspire others to confidently face the challenges of managing a UCD.”
The Immune Deficiency Foundation’s (IDF) National Conference will include a special symposium and activities for people affected by Chronic Granulomatous Disease (CGD). In addition to learning from experts, it’s an incredible opportunity for those living with the disease to meet peers who are also dealing with the rare disease.
Horizon Pharma sponsored scholarships that IDF provided for individuals and families with CGD to attend the conference in June 2017. Scholarships included retreat registration, hotel room, and limited travel.
People affected by CGD may apply for future scholarships by visiting IDFNAtionalConference.org/Scholarships.
CGD Connections is a community resource for people with chronic granulomatous disease (CGD), a rare disease affecting about 1 in every 200,000 people in the United States. Through a dedicated Facebook page, CGD Connections offers practical advice and helpful information about living with and managing CGD, as well as a place to share with others living with CGD.
To learn more, visit the CGD Connections Facebook page.
Know Cystinosis is a website dedicated to helping people with cystinosis, a rare, genetic metabolic condition. The site provides education about the disease as well as tips for living with cystinosis, including guides for talking with children, planning for school and college and more.
To learn more, visit KnowCystinosis.com.
Global Genes, a leading global rare disease patient advocacy organization, and Horizon Pharma have partnered to provide people living with nephropathic cystinosis an opportunity to further their education and pursue long-term career goals through a special scholarship.
“In our experience working alongside people living with rare diseases, we’ve witnessed an increasing resilience to overcome adversity and pursue long-term goals,” said Rob Metz, senior vice president, patient advocacy, Horizon Pharma plc. “We hope that these scholarships will give inspiration to many people living with the daily challenges of nephropathic cystinosis. Global Genes is an ideal partner to lead this effort, given the organization’s track record providing connections and resources for the rare disease community.”
The “Heroes of Caring” project was created to recognize and celebrate the extraordinary work of nurses who commit themselves to rheumatology care. This collaborative initiative—between the non-profit professional nursing organization, Rheumatology Nurses Society (RNS) and Horizon Pharma—captures the real-life stories and work of those caring for patients worldwide.
To learn more, visit HeroesofCaring.org and watch the video below.