Rare Genetic Disorders

Teens and young adults with a rare genetic disorders often find themselves fighting for survival on a daily basis. These disorders cause a host of medical issues that can affect brain development, motor control and organ function.

Youth with these medical conditions will be under intensive medical care their entire lives. As they reach young adulthood, the transition from pediatric care into adult care can be overwhelming. New doctors, new systems, and new responsibilities to manage their own care are coupled with life transitions like finding a job, living independently, and managing relationships.

Support is critical, and hard to find. That’s where Next Step comes in.

Our program for young people living with rare genetic disorders helps these individuals develop life skills, find community and become self-advocates so they can move beyond their challenges to become strong, independent, productive adults. The program is centered around a four day Summer Campference, co-designed by the young participants, health care professionals and Next Step. Workshops, a resource fair, music therapy and creative and social opportunities combine to create a curriculum that addresses transitional issues and arms young people with tools, information and hope for the future.


  • Children’s Hospital Boston
  • Maine Medical Center
  • Tufts Medical Center Baystate


Join Next Step's FREE Program For Teens and Young Adults Living with Rare Genetic Disorders

If you are a young person living with a rare genetic disorder who is interested in participating this FREE program at Next Step or if you know a young person who may be interested in this year-round program, please contact our program director, Kepler Jeudy, at kepler@nextstepnet.org or call our office at 617.864.2921.