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"excerpt":" Raregivers Header - Footer - 0 Skip to Content About Our Purpose Infographic TEDx Event Video Meet The Team Our Practitioners Mental Health Advisory Council News Financial & Governance Journey Map Map Overview Stage 1: Noticing Changes Stage 2: Adjusting +/- Diagnosis Stage 3: Shifting Responsibilities Stage 4: Full Time Care Stage 5: End of Life Stage 6: Finding Meaning Relief In Closing Download Journey Map Interactive Experience - BETA Get Involved Weekly Events Workshops / Retreats/ Programs / Awareness Raregivers Leadership Training UCSF Summit Registration May Mental Health Matters Raregivers100 Join the Raregivers™ Coalition Raregivers Coalition Toolkit Rare Disease Day - February 28 Resources/ Crisis Support Hiring Pledge Take The Pledge Blog Contact Us DONATE Open Menu Close Menu About Our Purpose Infographic TEDx Event Video Meet The Team Our Practitioners Mental Health Advisory Council News Financial & Governance Journey Map Map Overview Stage 1: Noticing Changes Stage 2: Adjusting +/- Diagnosis Stage 3: Shifting Responsibilities Stage 4: Full Time Care Stage 5: End of Life Stage 6: Finding Meaning Relief In Closing Download Journey Map Interactive Experience - BETA Get Involved Weekly Events Workshops / Retreats/ Programs / Awareness Raregivers Leadership Training UCSF Summit Registration May Mental Health Matters Raregivers100 Join the Raregivers™ Coalition Raregivers Coalition Toolkit Rare Disease Day - February 28 Resources/ Crisis Support Hiring Pledge Take The Pledge Blog Contact Us DONATE Open Menu Close Menu Folder: About Back Our Purpose Infographic TEDx Event Video Meet The Team Our Practitioners Mental Health Advisory Council News Financial & Governance Folder: Journey Map Back Map Overview Stage 1: Noticing Changes Stage 2: Adjusting +/- Diagnosis Stage 3: Shifting Responsibilities Stage 4: Full Time Care Stage 5: End of Life Stage 6: Finding Meaning Relief In Closing Download Journey Map Interactive Experience - BETA Folder: Get Involved Back Weekly Events Workshops / Retreats/ Programs / Awareness Raregivers Leadership Training UCSF Summit Registration May Mental Health Matters Raregivers100 Join the Raregivers™ Coalition Raregivers Coalition Toolkit Rare Disease Day - February 28 Resources/ Crisis Support Hiring Folder: Pledge Back Take The Pledge Blog Contact Us DONATE Relief For Hearts Who Need It Most JOIN OUR COMMUNITY 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. LEARN MORE 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. DONATE TODAY Emotional 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. EXPLORE THE MAP Raregivers™ Workshops Women's Empowerment Circle Tuesdays at 10:00 AM PST Join Padma Gordon , embodied mindfulness counselor, for a heartfelt and practical weekly workshop designed to support you in your relationship journey. Bring your questions, challenges, and triumphs — we’ll gather in community to support one another on the path of mindful connection. Tune in from the comfort of your home and take a step toward more conscious, connected relationships. Learn More Soulful Stretch & Strengthen Breathe, release, and rebuild with Soulful Stretch & Strengthen — an on-demand wellness experience created for caregivers, by caregivers. This gentle yet powerful series combines mindful movement, deep stretches, and bodyweight strength to help you reconnect with yourself, reduce stress, and restore balance — anytime, anywhere. Whether you're a beginner or simply need a moment",
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