3 digital spaces for patients to find community and support
Online communities have long provided people with the opportunity to connect with others across the globe, and as the internet has become more ubiquitous in our day-to-day lives, their popularity has only increased. Online groups often pop up surrounding a variety of focuses, from gardening to antiquing to listening to a particular podcast — but they have also become an important way for patients to connect with one another.
From sharing experiences, learning how to participate in clinical trials, and connecting with like-minded individuals, finding a community can be beneficial in many ways for those who are living with a medical condition. If you’re hoping to connect with patients in a digital space, keep reading for our suggestions about where to look.
Facebook Groups for patient support
If you’re a Facebook member, you may be familiar with Facebook Groups already. Facebook Groups have been staples in connecting people for quite some time, and are a popular way to discover patient support communities. Here are a few examples of Facebook Groups that might be helpful:
Crohn’s Disease Support Group is for Crohn's disease and colitis support and is made up of over 25,000 members. It’s a private group that requires posts to be approved so that moderators can regulate content and ensure it remains a safe and helpful place for all members.
Cancer Support Group for Patients and Their Families, with over 27,000 members, is a place for patients with all types of cancers and their loved ones to come together and contribute to the community. While many groups are specific to certain kinds of cancer, this group provides a larger, more general area for people to chat.
Heart Disease Support Group is a group of over 12,000 where members are encouraged to share their experiences and learn from reading others’ insights. It is a private group that prides itself on offering support, friendship, and advice.
Melanoma Warriors - Support, Advocate, Cure contains over 10,000 melanoma patients and caregivers. This private group aims to bring people together to learn from one another and provide support through every stage of the melanoma journey.
If none of these are what you’re looking for, Facebook allows users to search for keywords in group names so you can find the right community for you.
Reddit’s condition-specific communities
If you’re not familiar with Reddit, their slogan, “Dive into anything,” sums it up well. Reddit is a modern-day message board that has communities (referred to as subreddits or subs) for nearly any topic one could imagine. Its semi-anonymous nature makes it ideal for patients who are seeking privacy while still wanting to find support, and it tends to have strong and active patient communities. Some popular subreddits for patients include:
r/BreastCancer, a place for breast cancer patients, survivors, and caregivers to connect and share. Users post personal stories, resources for clinical trial matching, and medical developments in the space.
r/rarediseases aims to be a resource both for people suffering from rare diseases and those hoping to learn more about them. There is a range of conditions covered, but performing an inter-sub search can be a quick way to find specific topics.
r/LongCovid has grown exponentially in recent years and is now a large community for sharing symptoms, treatments, and diagnosis news. There is still a lot that is unknown surrounding Long Covid, making this a strong and supportive community.
Reddit also has a search feature where you can look up keywords, phrases, or subreddit names specifically, so you can find exactly what you’re looking for.
Online patient advocacy groups
In addition to using social media platforms as a resource, many patient advocacy groups have created their own online communities to provide support for specific conditions. Depending on the condition, a quick Google may help you find an advocacy group related to a specific condition, but we also wanted to list a few below:
My Valve My Voice from Heart Valve Voice is a private support group for people with heart valve disease. Users must request an invitation to join so privacy is at the forefront, but once signed up, there is a wealth of discussion and information to explore.
Melanoma Exchange is an online message board for anyone who has been impacted by melanoma, including patients and caregivers. People are able to share experiences, dispel rumors about clinical trial participation, and share news that’s relevant to the melanoma community.
Renal Support Network is an online community focused on supporting people who have been diagnosed with kidney disease. The group hosts support group meetings via Zoom, virtually conducts group exercise classes, and hosts webinars focused on topics relevant to kidney disease patients.
Finding community can be a great way to receive support from like-minded individuals, and finding a clinical trial can be a great way to help science move forward. If you’d like to find a clinical trial near you, answer a few questions today.