Know Someone Who Would Benefit from a Journey?
Being Positioned provides unforgettable travel experiences for adults with rare genetic disorders—designed to bring rest, renewal, and a sense of purpose.
Are you someone who meets the criteria? You’re welcome to apply for a journey through our Apply page. If you know someone whose life could be impacted by this experience, you can refer them below. Healthcare professionals can also use this page to refer patients directly.
Eligibility Guidelines:
To be considered for a journey, individuals must:
- Be 21 years or older
- Live in the United States of America
- Be mentally and emotionally capable of fully participating in a multi-day trip experience
- Have a life expectancy of at least 9 months (we do not offer end-of-life experiences)
- Have a rare genetic disorder that significantly impacts their quality of life
Conditions We Support (but not limited to): Neurofibromatosis Types 1 and 2, Schwannomatosis, Von Hippel-Lindau Disease, Charcot-Marie-Tooth Disorder, Hereditary Peripheral Neuropathies, Muscular Dystrophies, Ataxias, Huntington’s Disease, Hereditary ALS, Hereditary Spastic Paraplegia, Usher Syndrome, Leber’s Hereditary Optic Neuropathy, Wolfram Syndrome, Cockayne Syndrome, Alstrom Syndrome, Retinitis Pigmentosa, and others.
If you know someone who could benefit from this experience, we’d love to hear from you.