Age: All ages
Pagination: 96 pages
Size: 210 x 148 mm
Language: English
Publication: December 2025
ISBN: 978-2-38427-348-5 (print)/ 978-2-38427-349-2 (ePub)
Free
Living with a rare disease is not only a medical experience—it is a human one. It reaches into every part of life: the body that struggles, the mind that questions, the family that hopes, and the community that rallies. This book began with that truth and has followed it through the many ways people find comfort, meaning, and strength when medicine alone is not enough.
Across these chapters we have explored how complementary practices—mindfulness, yoga, art, touch, and reflection—can restore balance and dignity. We have met caregivers who hold entire households together, and patients who, despite pain and uncertainty, continue to build lives that are creative, purposeful, and full of courage.
The message is simple but profound: well-being is not a luxury or an afterthought. It is part of treatment itself. Every breath of calm, every shared laugh, every moment of understanding between a patient and a caregiver is an act of healing.
“Well-Being in Rare Diseases is an empowering guide, shining a light on integrative solutions that uplift, inspire, and enhance quality of life for those living with rare diseases.“
Professor Daniel Scherman (Director of the Foundation for Rare Diseases, Paris, France)
Dr. Julia Gleize is Medical Director at Clinique Intégrative des Cas Complexes, Institut Rafaël Santé Intégrative, Paris. She works at the intersection of Medicine, Technology, and Art to revolutionize how we experience Health and Wellbeing. Through truly Integrated Medicine, Dr Gleize sources from ancient traditions as well as bleeding edge advances, always with joy as a prime directive.
Dr. Levine, President Fondation Ipsen, has three decades of experience in the healthcare sector principally at Mayo Clinic. For the last 6 years he has been President of Fondation Ipsen, an international science foundation focused on biotech innovation in Rare Diseases. A physician and scientist, James has published more than 200 articles, six papers in Science and Nature plus articles in journals such as, the New England Journal of Medicine, Lancet and JAMA. He has written four books published in 19 languages in 37 countries.
