Shortly after taking over their family's healthcare communications agency, Ted and Rob Newland realized that not only were there significant gaps everywhere in the chronic illness patient experience, but that patients were developing their own resources in order to fill those gaps. It became apparent that to affect real change, patients, caregivers, patient advocacy groups, and pharmaceutical companies needed to come together and have meaningful discussions. Through this work, patient concerns could be better defined and all stakeholders could work towards finding the solutions that would benefit patients and caregivers.
The Newlands' long-term shepherding of patient advisory boards continued to uncover patient communities that could benefit from improved connections. In 2016, they were tasked with the creation of an advisory board for ulcerative colitis (UC). It rapidly became clear that there was a need for a non-profit group focused on the unique concerns of people with UC. Patients with UC described challenges in how the disease is perceived by the public, as well as a lack of funding and support for UC-specific interests, such as having access to medications and the understanding of surgical treatments by healthcare providers and patients alike.
With these vital needs in mind, in 2017, a group of UC patients and experts formed the National Ulcerative Colitis Alliance (NUCA). Board members are comprised of UC patients as well as people intimately versed in the chronic illness community who have experience in working with patient groups. NUCA’s ultimate goal is to improve the quality of life for those living with UC, which includes:
- Offering resources that provide real-life solutions for problems unique to UC patients
- Creating an online infrastructure that enables UC patients to connect and share information
- Hosting in-person events where people with UC and caregivers can curate meaningful relationships
- Providing people living with UC with a reliable source of information about their disease
- Increasing public knowledge about UC and erasing myths and stigma
- Supporting legislative policies that increase funding for UC-focused research
NUCA is poised to become a driving force behind patients with UC and their caregivers, helping them to live more fulfilling lives. Join NUCA’s mission today by signing up for the newsletter, “Did UC?” or by donating!