Utilizing a first-of-its-kind, six-phase emotional journey map, the program addresses the mental health crisis in the rare disease community
ANGEL AID, a nonprofit support organization for families of children with rare diseases, announced the Raregivers™ Coalition Mental Health & Wellness Program – a global initiative to provide sustainable emotional support for rare disease caregivers, patients and professionals. Leading a coalition of doctors, researchers, pharmaceutical companies and patient advocacy organizations, ANGEL AID has taken a significant first step toward providing global mental health support by leading a meta-research study informing the subsequent co-development of a disease-agnostic emotional journey map.
A foundational element of the Raregivers™ Coalition Mental Health & Wellness Program, the Raregivers™ Emotional Journey Map utilizes extensive research from 287 peer-reviewed academic articles, stakeholder reviews, focus groups and data analyst mapping to document a six-stage cycle of hope and grief for rare disease patients, caregivers and the network of professionals working in the field of rare disease. The stages are as follows:
- Noticing Changes
- Adjusting +/- Diagnosis
- Shifting Responsibilities
- Full Time Care
- End of Life
As leaders in rare disease support for the 7,000 rare diseases that exist worldwide, ANGEL AID and its partners launched the initiative in response to a lack of mental health research, recognition and care available to those struggling to cope with the day-to-day realities of long-term disease management, loss and the current lack of treatments and cures.
“We have a global mental health crisis in the rare disease community. Billions of people are suffering emotionally – 350 million patients, their caregivers and the extensive network of doctors, nurses, researchers, scientists, patient advocates and many other professionals who work in the field of rare disease,” said Cristol Barrett O’Loughlin, founder and CEO of ANGEL AID. “The Raregivers™ Emotional Journey Map details the six stages of emotional suffering, from pre-diagnosis to survivorship, in order to help the field build sustainable mental health support systems. We can bring so much relief by acknowledging that hope and grief often live in the same human heart.”
The Raregivers™ Emotional Journey Map and the Raregivers™ Coalition Mental Health & Wellness Program were unveiled at the World Orphan Drug Congress USA 2022, an annual conference that brings together over 1,200 attendees and 250 professional speakers from all over the globe to advance orphan drug development and improve access to life-saving therapies. The emotional journey map is now available as a disease-agnostic mental health tool for families and professionals, along with a discussion guide to facilitate conversation during patient diagnosis, clinical trials, symptom-management and, where necessary, end-of-life and survivorship phases.
Speaking on behalf of the 350 million people affected by rare diseases (58.3 million being children who will not live until the age of five), O’Loughlin was invited by conference organizer Terrapinn to address the critical need for mental health support with Amy Akers-Teets, global public affairs at Sanofi, and psychologist Al Freedman. The trio examined the barriers and opportunities to advance emotional care, education and accessibility.
“When caregiving responsibilities shift over time in the context of rare disease, it’s easy to lose your sense of self,” said Alexandra Howson Ph.D., principal at Thistle and lead data analyst and co-author of the Raregivers™ Emotional Journey Map. “Being in a community with other ‘raregivers’ offers a healing space to acknowledge these shifting responsibilities, practice self-nourishment and sustain a vibrant sense of self.”