Why Joining Your Rare Disease Community Is Important

When my son originally got his rare disease diagnosis back in 2020, I was told about a private Facebook group for families. At first, I was hesitant to join because I was not sure I wanted to see what other families went through. But, after thinking about this for some time, I ignored my feelings and joined the group.

Looking back, I am so proud of myself for doing that because it changed my life.

What I discovered in our rare disease community

In the group, I saw children facing unique challenges and vulnerable parents just wanting to find a therapeutic intervention that worked for their children. Determined to make that happen, I brainstormed as I connected with families.

Still, to this day, I feel I can't always relate to everyone in the group, but that's something we have all felt at one time or another. Finding even the tiniest way to relate to someone else's day-to-day has created a bond of trust and understanding in the challenges we all face, making us feel less alone.

A type of support that doctors cannot give

As a rare caregiver, I feel that professionals do not offer as much support to rare disease patients and their families as they do to neurotypical families. Thus, it is often rare families supporting other rare families. The community may not always have the answers, but it can provide assistance, encouragement, and support. As a whole, we will come together and support you.

Validation from others who "get it"

Finding people outside of the rare disease community to understand my daily feelings has been difficult. It's much easier for them to judge me. But since joining the rare community, I have felt listened to, validated, and supported more than ever. I have friends cheering me on from across the world, giving me the confidence to keep going.

Lately, I find myself caring less and less about what the general public has to say. Instead, I smile back when they stare at me, taking all of the negative and making it a positive through my advocacy work, which I would not be able to do without the people in my life.

Paving a new way with my community

The days are long, but I remain dedicated to spreading awareness, driving research, and searching for therapeutic interventions for rare diseases as a whole.

It is because of our community that a new way can be paved. I am no expert by any means, but I am proud of the things I have accomplished in such a short amount of time. I hope to use my story – the ups, the downs, the good, the bad, the pretty, and unfortunately, the ugly – to continue to inspire those around me who face similar challenges.

Are you part of a rare disease community? What has your experience been like? Share in the comments below.