A Rare International Dialogue: Using Technology to Connect Patients with Rare Disease

Industry leaders from around the world are gathering for A Rare International Dialogue, hosted by Rare Disease International and Canadian Organization for Rare Disorders. The conference will see these leaders across the health industry discuss research, policy, and action plans for the advancement of rare disease awareness and treatment.

Speakers at the conference include Curatio CEO Lynda Brown-Ganzert. Curatio is the only globally privacy complaint social network for health that helps to support patients at scale. Curatio’s mission, “No patient alone,” is a compelling reminder of the power of social to help patients achieve their best health outcomes.

According to the World Health Organization (WHO), one in every 15 people worldwide are affected by a rare disease, most of which are genetic in nature. This equates to about 400 million people worldwide.

Compared to more common diseases, rare diseases face fundamentally different challenges, especially during clinical development stages. Patient groups are often limited in number, dispersed throughout the globe, and there is a limited availability of clinical expertise and expert centres. Furthermore, patients can often fail to receive diagnosis and proper treatment due to a lack of basic knowledge of the cause, pathophysiology, and natural course of many of these diseases. In order to address these challenges, continued investment into funding and research of these diseases remains necessary.

For patients living with a rare disease, the lifestyle and stigma of coping with the challenges associated with it can be overwhelming. Many patients may even have to confront these challenges alone, which can adversely affect everything from their health outcomes, adherence, and quality of life. According to a 2017 study from the Journal of Rare Diseases, the incidence of mental health disorders is significantly higher in individuals with a rare disease, compared to the general population. As such, healthcare industry leaders have a responsibility to ensure greater attention and care towards the psychiatric and social well-being of these patients. Digital solutions such as Curatio are leading the charge in leveraging the power of social networking in order to provide patients with the support and engagement they need from their peers.

A review recently released by the Journal of Oncology Practice discusses the use of social media in aiding cancer patients in their recovery. The review highlights strengths and potential drawbacks of social media, and shows how the use of social media can be an effective way to reduce isolation and loneliness for patients. According to researchers, the primary benefit of social media for patients is that it promotes patient engagement and empowerment. With specific regard to rare diseases, one study on rare disease-specific social media sites even acknowledged that for many rare disease patients who do not have a social support group for their disease, they will end up joining a different rare disease group to obtain support. Although their conditions may be medically very different, the connection between the two groups remain meaningful and can grow through shared experiences. This study demonstrated the sense of community and connectedness that can transcend disease-specific boundaries and become a central part of the daily lives of these patients. By directly putting advice, medication trackers, and symptom management directly in the hands of the patient, it allows them to regain ownership of their health in a time of turmoil.

These social support systems are important for both patients and their caregivers, who can often carry much of the burden in coping with the rare disease. In a study from Issues and Innovations in Nursing Practice, researchers examined stress and well-being among parents of children with rare disease. It was demonstrated that these parents can experience stress, especially related to lack of competence, social isolation, and emotional demands. These can be prevented by developing parents’ competence and empowerment with regards to caring for their child.

As new generations of medications and clinical trials slowly become available for rare diseases, healthcare providers should nevertheless consider the importance of social well-being and peer connection that their patients need. The opportunities for technology to assist with this challenge are wide-ranging and can have positive effects on patients and families affected by rare disease. Providing healthcare access to patients using technology is one way that these leading industry members can strive towards greater innovative and visionary ideas for the benefit of patients worldwide.