Rare & Resilient

Rare & Resilient Bringing Rare diseases together

06/22/2026

We are rare and resilient and we are looking for other warriors fighting rare diseases, caretakers caring for those with rare diseases and healthcare workers with experience with working with those with rare diseases to join our community!

We are looking to not only build a community but build a resource hub for all of us to access and utilize whenever we need to.

Krystle and Theresa have a vision and this is only the beginning of it. For anyone fighting a rare disease…you belong here! Follow us, join us and feel free to join our private Facebook community to share your story.

Welcome to Rare & Resilient! 🦓We are Krystle and Theresa, two women living with rare diseases who met during rehabilitat...
06/16/2026

Welcome to Rare & Resilient! 🦓

We are Krystle and Theresa, two women living with rare diseases who met during rehabilitation at Johns Hopkins Bayview.

Krystle lives with Necrotizing Autoimmune Myopathy (Myositis), and Theresa lives with Acute Flaccid Myelitis (AFM). After sharing our stories, we realized there was a need for a safe space where people affected by rare diseases could connect, support one another, and share resources.

That’s how Rare & Resilient was born.

Whether you’re living with a rare disease, caring for someone who is, advocating, or working in healthcare, you’re welcome here.

Join our private Rare & Resilient Community Group and become part of a supportive community that understands the journey.

Together, we are stronger. Together, we are Rare & Resilient. 🦓

Fb group ➡️ https://www.facebook.com/share/g/1HR2MGwHia/?mibextid=wwXIfr

StrongerTogether

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6 Barnacle Court
Berlin, MD
21811

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