Social media’s ability to unify populations despite distance has come to be a key element for patients living with rare diseases, as online communities have provided support to patients who may otherwise have never found another human facing the same challenges as themselves. Whether it’s a closed Facebook group or a rare-disease-dedicated platform, like any community, these platforms must follow an unwritten set of rules that guide a productive and positive environment for its particularly vulnerable population.
Share Your Experience
First and foremost, these communities are places for people to find and connect with others facing similar challenging situations. One patient sharing his or her personal journey can cause others to feel less isolated given that they may be experiencing the same symptoms and difficulties they are, or even see patterns they hadn’t noticed in themselves.
Many patients with rare diseases have become consummate experts in what is going on in their disease state, having researched and kept up to date on what treatments are available, or in development, and where advocacy is needed. As the exchange of knowledge, experiences, and perspectives increases, so can advocacy. Ongoing and proactive communication can help galvanize the community to achieve their goals for increased access to resources through new legislation.
Don’t Let Others Learn the Hard Way
Share successes! Patients can help their peers prepare for the challenges of getting into a clinical trial, or on treatment and adhering to their regimen. Suggestions of fun activities and special recipes go a long way for preserving precious family moments despite disease-related limitations.
Sometimes patients share books they’ve read or movies that resonated with them—anything that applies to the patient experience is a valuable contribution to the group, big or small, and often these are not found in mainstream media. For example, the documentary film “Rare in Common” features the journeys of families in the rare disease community. As they go about living life as fully and lovingly as they can, while searching for a diagnosis and then treatment you get a glimpse of them as real-life heroes.
Another example is the illustrated children’s book “Rare is Everywhere,” which opens a door for parents and children to talk about how our differences, rooted in genetics, are to be celebrated. It introduces children to the white tiger, the blue lobster, and other animals whose genetic mutations make them different and beautiful! Proceeds go to the Rare Disease Foundation. A gem like this might go undiscovered without a social media network to spread the word.
Patients can also help each other seek help to pay for needed resources, for example, the National Organization of Rare Diseases (NORD) offers a financial assistance program for medical foods and supplements for patients with Urea Cycle Disorders.
Go Beyond the Social Networks
Allow social media to facilitate the connections, and then take it one step further. While these groups offer a sense of community, many patients and families also benefit from attending live events, such as the Rare Patient Advocacy Summit conducted by the non-profit Global Genes, where they can interact with their peers, advocates, and rare disease experts.
Patients and their families can also stay informed of pending legislation and the activities of the Rare Disease Congressional Caucus through Rare Disease Legislative Advocates, and then inform their peers of updates, or bring a group together for further advocacy through their social media networks.
Social media advocacy groups and similar platforms provide an opportunity to network with others across the globe that are in similar unique positions. Through unified communities, regardless of geographic location, rare disease patients and families can join together to change the landscape of opportunities for similar families to come.