The Importance of Building a Community in Rare Disease Advocacy

 

I remember the long days that Dot and I spent in the NICU together. Her fighting every moment for her life and to live, and me being there by her side every step of the way doing whatever the next best thing for her medical journey was.

Dealing with a rare disease can be a isolating and overwhelming experience. It's not uncommon for patients and their loved ones to feel like they are the only ones facing the challenges that come with a rare disease. However, seeking out a community of others who are also affected by the same condition can provide much-needed support, resources, and a sense of belonging.

One of the benefits of being part of a community is having access to a wealth of knowledge and experience. Many rare diseases are not well understood, and it can be difficult to find reliable information about treatment options and managing the condition. By joining a community of others with the same rare disease, you can learn from those who have been living with the condition for longer and have developed strategies for managing it.

In addition to sharing information and providing support, being part of a community can also help you feel less alone. It can be incredibly isolating to deal with a rare disease, especially if you don't know anyone else who is going through the same thing. Connecting with others who understand what you're going through can be incredibly comforting and can help you feel less isolated.

Another important aspect of being part of a community is the opportunity to advocate for change. Rare diseases often receive less attention and funding than more common conditions, and patients and their loved ones can sometimes feel like they are fighting an uphill battle to get the support they need. By coming together as a community, you can have a stronger voice and be better equipped to advocate for the resources and support you need.

Seeking out a community when dealing with a rare disease can provide valuable resources, support, and a sense of belonging. It can also give you the opportunity to advocate for change and make a difference for others with the same condition. If you're dealing with a rare disease, consider reaching out to organizations and support groups that can connect you with others who understand what you're going through.

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