One in ten families worldwide are living with uncured rare, chronic and complex diseases – many more are undiagnosed. Our community is global, reaching every remote corner of every country on earth. Yet we are fragmented. There are more than 10,000 rare diseases and we are so often focused on the specific disease, we forget to focus on what is common – our feelings.
We have a shared experience. Every community suffers from the social, emotional, financial and physical impacts of disease. The suffering of the care providers are often unseen as precious resources are used for treatment and care of our loved ones. We also grapple with these facts: half of rare patients are children and a third of these children will not see their 5th birthday. There are only treatments for 5% of rare diseases. There are no cures.
This reality is unimaginable for most people. So our rare caregivers, patients and professionals tend to become isolated, treading in deeper and deeper waters, meeting each day with bravery and courage; often left feeling anger and disappointment. At Raregivers we believe in uplifting rare families by caring for the caregivers. Our Health & Wellness Practitioner Network brings a curated group of world-class healers to you and to your community. Through guided online training, YouTube workshops, experiential retreats, crisis support and a multilingual global network, the Raregivers Coalition is connecting hearts daily in a safe, nurturing environment.
We commend you. You have taken that first step. You have invested in yourself.
As you explore the Raregivers™ Emotional Journey Map & Guidebook, you can be confident that the explanations and exercises were developed by a coalition of caring, global experts. Through 287 pieces of published research and deep insights from a leading practitioner, Dr. Laura Riordan, you will find the holistic, person-centered pathways and resources to sustain you when “life gets medical.” These journeys can be long and life-altering; they can churn your heart through cycles of hope and grief. We walk with you.
Cristol Barrett O’Loughlin
Raregivers™, Founder & CEO
Laura Riordan, PhD
Psychologist & Transformational Coach
