Navigating life with a rare disease can feel overwhelming, but you don’t have to do it alone.

 

We have gathered helpful resources to support individuals and families across our state and beyond. Here you’ll find state resources that benefit the rare community, opportunities for grants and financial assistance, and national resources that connect you to broader support, advocacy, and information. Our goal is to make it easier for you to find the tools and connections you need on your rare journey. Let us know if you have a resource to add. We'll continue to add resources so be sure to check back! 

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We want to highlight a new partnership between Raregivers and Crisis Text Line that is expanding free, 24/7 mental health support for people living with rare, chronic, and complex diseases. If you or someone you love needs support, you can text “RARE” to 741741 (or “RARAS” for Spanish) to connect with a trained crisis counselor anytime. The service is free, confidential, and available 24/7. Resources like this matter. No one in the rare community should feel alone.

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