The journey with a rare disease, like myasthenia gravis (MG) or AL amyloidosis, can be very isolating. Navigating complex medical information, facing limited treatment options, and often encountering a lack of understanding from those outside the experience creates a unique set of challenges. However, amidst these difficulties, the power of community offers a beacon of hope and support. Connecting with others who share similar experiences can provide invaluable emotional support, practical advice, and a sense of belonging. This article explores strategies for building community when living with a rare disease, emphasizing the importance of connection and providing practical resources.1
The Power of Shared Experience
The sense of isolation is a common thread among individuals with rare diseases. Unlike more prevalent conditions, rare diseases often lack widespread awareness, leading to feelings of being misunderstood. This isolation can be worsened by the limited amount of readily available information and the difficulty in finding healthcare professionals with specialized knowledge. Building a community, therefore, becomes a needed aspect of managing the disease’s impact on one’s life.2,3
As the National Organization for Rare Disorders (NORD) highlights, “Rare diseases affect an estimated 30 million Americans, and while each disease is individually rare, collectively they are not.” Recognizing this collective experience is key to breaking down the feeling of isolation. Connecting with others who understand the complexities of living with a rare disease provides a unique form of support that cannot be replicated by those outside the experience. This shared understanding fosters empathy, validation, and a sense of belonging.
Navigating the Landscape of Rare Disease Communities
Finding a community requires a proactive approach. Here are key resources and strategies:
- National Organization for Rare Disorders (NORD): NORD serves as a central hub for the rare disease community. Their website provides a comprehensive database of patient advocacy organizations, connecting individuals with disease-specific support groups. This resource is invaluable for identifying organizations dedicated to specific rare conditions.4
- Genetic and Rare Diseases Information Center (GARD): GARD, a program of the National Institutes of Health (NIH), offers information about rare diseases and provides resources for connecting with patient organizations and support networks. Their website is a valuable source of information and a gateway to community resources.5
- Patient Advocacy Organizations: Many rare diseases have dedicated patient advocacy organizations that provide support, resources, and advocacy efforts. These organizations often host online and in-person support groups, conferences, and other events that facilitate community building.
- Clinical Research Studies: Participating in clinical trials or research studies can connect individuals with others who share their condition. These studies often bring together individuals with similar experiences, fostering a sense of community and shared purpose.
- The NOWINCLUDED App: Offers interactive forums to ask questions and get answers from real people within the community. You can also chat with people in your circle, which makes finding virtual/online connections that much easier.
Once potential community connections are identified, it’s essential to actively engage and build supportive relationships. This involves:
- Sharing Experiences: Openly sharing experiences and challenges can foster a sense of connection and validation.
- Offering Support: Providing support and encouragement to others in the community strengthens bonds and creates a sense of reciprocity.
- Advocating Together: Joining forces with others to advocate for research, treatment, and support can empower individuals and create a sense of collective action.
Community support is not just helpful for people living with a rare disease; it can be an essential lifeline. The emotional support, practical advice, and sense of belonging that come from connecting with others who understand the experience can significantly improve quality of life. By utilizing available resources, actively engaging in online and offline communities, and fostering supportive relationships, individuals with rare diseases can find their tribe and navigate their journey with greater resilience and hope.
References:
- Taub, J. (2025, February 18). CSL. https://www.csl.com/we-are-csl/vita-original-stories/2025/rare-disease-patients-need-social-connections-to-thrive
- Witt, S., Schuett, K., Wiegand-Grefe, S., Boettcher, J., & Quitmann, J. (2023). Living with a rare disease – experiences and needs in pediatric patients and their parents. Orphanet journal of rare diseases, 18(1), 242. https://doi.org/10.1186/s13023-023-02837-9
- eClinicalMedicine (2023). Raising the voice for rare diseases: under the spotlight for equity. EClinicalMedicine, 57, 101941. https://doi.org/10.1016/j.eclinm.2023.101941
- National Organization for Rare Disorders (NORD). (n.d.). About Rare Diseases. Retrieved from https://rarediseases.org/rare-diseases/
- Genetic and Rare Diseases Information Center (GARD). (n.d.). GARD: Genetic and Rare Diseases Information Center. Retrieved from https://rarediseases.info.nih.gov/
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