About two and a half years ago, my colleagues and I at Horizon Therapeutics dreamed of creating a platform that would unify the thousands of voices in the rare disease community and offer a place to share their stories and support. Thus, #RAREis Instagram was created.
Since then, we’ve heard and shared hundreds of incredible stories, partnered with Sing Me A Story to write songs for children living with rare diseases, and helped bring children living with rare diseases from orphanages to loving homes with their forever families through the RAREis Adoption Fund with Gift of Adoption. Today we’re excited to take the next step toward our goal by launching the #RAREis Community website – a helpful place for community building, resource sharing and support through the challenges of living with a rare disease. This website was created in partnership with people living with rare diseases to help meet the challenges at hand.
After listening to countless stories and rare disease journeys, we heard loud and clear that there was a need to bring together resources that help those living with rare diseases and their caregivers navigate through the challenges of life’s transitions. We have dedicated a portion of our site to meet this need. The goal of RAREis Transitions is to serve as a hub for up-to-date resources that help people meet healthcare and medical needs, assist them with future care and planning, and empower them to secure education and employment while living with rare diseases. For example: Your child with a rare disease is moving from pediatric to adult healthcare; how do you even start that process? You can find the answer to that question here. We’ve partnered with a number of organizations that share a common goal with Horizon in supporting people living with rare diseases and are proud help carry their impact through this site.
As we at Horizon continue our efforts to amplify and connect the voices of the rare disease community, we ask that you continue to share your stories and support with us on social media using #RAREis, and now also on the Your Voice section of this site. I’ve witnessed firsthand how the story of one person’s rare disease journey can have an incredible impact in the lives of many. Every individual journey matters and every person has a story. How has another person’s story of their rare disease journey impacted you?
We hope that #RAREis will continue to elevate the many voices in this community and raise awareness to the challenges they face and, with this website, connect people living with rare diseases and their caregivers to a strong network of resources that will support them for many years to come. To those who have shared their stories and support with us over the past couple of years – thank you. We couldn’t have done this without you, and look forward to continuing this journey with you.
— Robert Metz, senior vice president, patient advocacy at Horizon