BOOMITY|Health
Weekly Blog
By Joan Kincaid, November 5, 2024
For people with rare diseases, finding accurate information, emotional support, and practical resources can feel like an uphill battle. With only about 5% of rare diseases having an FDA-approved treatment, patients often turn to each other to fill the gaps left by limited medical knowledge and support. Online health communities offer a crucial alternative, creating a space where those with similar conditions can connect, share insights, and find much-needed solidarity.
In my work with BOOMITY|Health, I’ve seen the transformative power of these communities. Rare disease patients face unique challenges, and their support systems need to be as adaptive and responsive as they are. This aligns closely with Susannah Fox’s work as a long-time advocate for patient-led health movements. Fox emphasizes that patients with rare diseases often lead the way in health innovation, pioneering new ways to manage their conditions, learn from one another, and even contribute to clinical understanding.
Rare Disease Patients: The Search for Community and Knowledge
One of the most profound benefits of online health communities is the support network they provide. Patients who may feel isolated and underserved find a home among peers who truly understand. Studies, like those by researchers Ashtari and Taylor, confirm that patients with rare conditions gain substantial benefits from online support groups. These patients not only access hard-to-find information but also build resilience and confidence by connecting with others who share their journey.
Through online health communities, rare disease patients gain access to:
Specialized Knowledge and Self-Advocacy: Rare disease patients often share the latest research, referrals to helpful specialists, and management tips with one another. This active sharing enables patients to become informed advocates, more prepared to discuss treatment options with their doctors.
Emotional Support and Shared Experience: Online communities provide an empathetic, safe environment to share stories and strategies for coping, helping to reinforce resilience and reduce isolation.
Guidance from Patient-Led Experts: Many patients with rare diseases become “experts by experience,” learning to navigate the healthcare system, advocate for themselves, and even influence research. By leveraging the collective wisdom of their community, they are better equipped to manage their unique challenges.
How BOOMITY|Health Empowers Rare Disease Communities
At BOOMITY|Health, we’re dedicated to creating a platform that supports these peer-driven models, empowering health organizations to create private, patient-centered communities with the security, structure, and access to resources that rare disease patients need. Our platform includes:
Privacy and Security: BOOMITY|Health’s privacy-focused design helps members feel secure sharing personal health experiences in a protected environment.
Searchable, Organized Resources: Following best practices, BOOMITY|Health allows organizations to structure their resources by condition and topic, making it easier for rare disease patients to find relevant information.
Tools for Community Moderation: While we don’t provide direct moderation, BOOMITY|Health offers tools that allow organizations to effectively manage a safe space for their members, aligning with Fox’s vision of patient-led, self-regulating communities that can tackle misinformation.
By creating spaces where rare disease patients can connect, share, and learn, BOOMITY|Health empowers them to take control of their health journeys. For those dealing with rare conditions, a community like this can mean the difference between isolation and an informed, supportive network of peers.
Ready to Start Your Community?
If your health organization is considering an online peer-to-peer health community, let's chat. Reach out to me at joan@boomity.com or visit www.boomityhealth.com for more information.
Let’s build a thriving community together!
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