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™
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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