NUCA was created to educate, connect, and empower people living with UC and their caregivers. A big part of that is providing tools, programs, and resources that will support and benefit the UC community. NUCA works to remove stigmas about UC and promote awareness and understanding of the disease amongst the public, using patient- and caregiver-inspired initiatives to deliver maximum benefit to the community.
At NUCA, we are a team of dreamers and thinkers, so the list of ideas for programming at HQ is miles long. There is so much that we want to do to help make a difference. But in the interest of being realistic, we’ve culled it down into a set of more realistic goals for the next few years. Here are some of the projects that NUCA is poised to create in concert with the UC community:
NUCA.life is ready to become the one-stop shop for all things UC! Educational and lifestyle content will be tailored to each visitor (patient or caregiver), their current life stage, and disease state (such as being newly diagnosed, having an established diagnosis, or living post-surgery). We’re proud to take patients’ feedback and perspective as we continue to build this resource to be exactly what it needs to be for each person who uses it.
UC is a complicated condition and staying up-to-date takes effort, and not everybody wants to sit down and read a medical text cover to cover. For this reason, NUCA will provide information about the disease in a variety of formats to connect with patients and caregivers in the way that best suits them, including webcasts, podcasts, webinars, and videos. We strive to stay true to our mission of meeting people where they are and providing the support they need in the way they want to receive it.
Patients and caregivers need support in different ways and for a variety of reasons. If you’re a keyboard warrior, NUCA will provide chat rooms and forums. If you prefer to talk face-to-face, we are planning in-person support sessions in locations around the country. Perhaps you’d like to be matched up with a one-on-one connection in the community to chat—we can do that too. People want to receive support in different ways, and we understand and embrace that.
When patients connect, great things happen. NUCA plans to bring the UC community together with virtual summits that will help patients not only learn about the disease and get updates on progress and pipelines, but also create new relationships that will fortify them on their journey.
Weekend RetreatOne thing that we consistently hear from our friends in the UC community is that having the opportunity to spend time with people who inherently understand your condition and can relate without any explanation can be life-changing. An annual retreat provides an opportunity for patients and caregivers to have a respite from the daily concerns of UC but also to take part in educational programs, expert forums, and social activities.
Mobile AppsIs your phone within reach? Almost always, right? We want to be that accessible to you. A NUCA mobile application created specifically for people living with UC and their caregivers is an opportunity to help patients capture not only information about their symptoms, but also sleep, nutrition, and mental health. Other offerings within the app may include practical resources such as a bathroom finder, fitness tracker, and a meditation program.
Living with UC is expensive. In the interest of assisting people with UC in their everyday lives, NUCA will seek to provide financial assistance for UC-related costs such as transportation to physician appointments, child care, and participation in programs that promote overall wellness.
College is expensive, too! But it should be an attainable goal for those who want to attend, and NUCA will seek to establish a scholarship program to help those living with UC to attend an accredited university in the United States to help defray some of those costs.
Mental Health Resources
One of the biggest gaps in support for UC patients is centered around emotional well-being and mental health, from anxiety and stress, to body image issues, to depression and isolation, we consistently hear that patients want more in the way of resources. Wellness includes coping with the emotional aspects of living with UC, and NUCA will develop a program that includes mental health professionals who will be available to assist patients across the country through telehealth appointments.
NUCA was founded on the premise of support the whole patient at whatever disease state they are in, and these diverse initiatives aim to support that. Achieving funding and assistance in creating these programs for the UC community may improve the lives of people living with UC, helping them to accomplish not only their treatment objectives but also their career and life goals. Breaking down the stigma around UC through educational outreach to patients, caregivers, and the public is within reach and will help patients to be better understood by their friends, coworkers, and loved ones, which is what we are all about.