Relief For Hearts Who Need It Most

What is a “Raregiver”?

1. Those rare individuals who hold both hope and grief in the same human heart.

2. Caregivers, patients, family, friends, teachers, doctors, healthcare professionals, patient organization leaders, researchers, academics, advocates, biopharmaceutical employees, gamers, entertainers, technologists and all others in the community giving their talents, time and life-force to further and honor chronically medicalized lives.

Raregivers™

  • "Being a medical parent is full of challenges. There are times you feel like you're helpless and hopeless. This community always picks me up when I need it most ."

    -Megan L.

  • "I had to find my own way of getting stronger. I did it because my children needed me. I feel safe in a community knowing I'm not the only one."

    "I had to find my own way of getting stronger. I did it because my children needed me. I feel safe in a community knowing I'm not the only one."

    -Phyllis R.

  • "This group gets me connected with people who really understand with no judgement. Sometimes I just need to hear it's going to be okay."

    -Julie S.

  • "I enjoy connecting with other Rare Parents. It does a lot for my heart... having a safe space to share and understand where others are at to has helped light a path to growing and becoming stronger."

    -Kelsey C.

Honor Our Raregivers™

There are 350 million people worldwide living with a rare disease, more than AIDS and cancer combined. There are no cures for the 10000+ rare diseases and only 5% have treatments. One third of rare children will not see their 5th Birthday.

Raregivers provides emotional support to families living with rare, chronic and complex diseases. The reality of daily long-term caregiving is unimaginable. Your generous donation goes directly to sponsoring a Rare Mother or Rare Father in our weekly support groups and quarterly wellness retreats @ Barrett Family Ranch. We can do so much - together.

RAREGIVER JOURNEY MAP

The emotional health of patients, their caregivers, and the professionals supporting them is a drastically undocumented and unsupported reality in rare, chronic and complex disease communities. Since 2019, Raregivers™ has been leading a meta-study of published research, proprietary data and documented, lived experiences that clearly define the common emotional impact on medicalized lives. Our Raregivers™ Emotional Journey Map is free, downloadable for anyone to use in family, medical, social or workplace conversations to help increase understanding about feelings. It is for you.

Raregivers™ Coalition Partners

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