Having a rare disease can be exhausting and isolating. Horizon Therapeutics is launching two different programs this month aimed at helping the 500-600 people in the U.S. who are living with cystinosis.
One project focuses on self-care, and one encourages younger people to meet up and express themselves through theater about a serious disease with a lifelong impact that can affect many parts of the body.
For Horizon’s second self-care week June 13-17, which is an expansion on last year’s initial launch, the pharma, through its online patient community Cystinosis United, sent patients and caregivers free self-care kits including spa face masks, stress balls, a journal and some edible treats. In addition, there were online interactive activities for members of the Cystinosis United Facebook group such as a virtual yoga class; a tutorial on bullet journaling; a discussion with advocacy partner Maya Doyle, Ph.D., on self-care; and a live Q&A with Cystinosis Research Network leadership talking about community resources.
“We've got this great resource. It sits on our website, we tell people about it, but we wanted to bring it to life, which is what brought about this whole week,” said Amanda Phraner, Horizon’s senior director of product communications, in an interview.
“So the box of activities includes the resource guide, the self-care project book, but it also includes a journal and a pen to be able to use when we talk about bullet journaling and how bullet journaling can be a part of self-care.”
The other initiative, the Speak Up, Speak Out Theater Workshop (June 24-26) is geared toward younger people ages 13 to 22 living with cystinosis to encourage them to be a part of the community and empower themselves though creative works. The project, which is in partnership with Believe Limited, a company that focuses on working creatively within disease states, will end with a performance of the work in Chicago.
These teens and young adults have been living with cystinosis their whole lives, often with their parents being heavily involved. Horizon wanted to open up the options on dealing with and processing a rare disease in a creative and informal way. Applicants submitted their stories, and that will make up the basis for the workshops.
“The idea is to give them a space to talk about their disease in a more interesting way that doesn't feel like it's everything, but also give them the freedom to express themselves,” Phraner said. “There is value there, but there's also value in getting insights when people just connect and talk and express themselves.”
Both projects are unbranded, but Horizon does market Procysbi, a cystine-depleting agent indicated for the treatment of nephropathic cystinosis in adults and pediatric patients 1 year and older. Procysbi which was first approved in 2013 for patients over the age of 6. In 2020, the approval lowered the age to 1 year old.