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New Videos Offer Guidance for Young Adults with Genetic Conditions

Helping Teens as They Transition to Adulthood

Monday, Jun 1, 2015

Delaware Valley

The transition from adolescence to independent young adulthood can be an especially challenging time for people with special health care needs, including those with genetic conditions. An often overlooked area of discussion for teens revolves around starting one’s own family and who can assist in planning and assessing genetic risk factors young adults need to know their medical history and rights as they consider their future.

To help patients, families and caregivers understand many important issues related to this period of transition, Nemours received an Impact Award from the Genetic Alliance, to develop two videos now available on YouTube. The videos address family planning and adult challenges for young people with genetic conditions.

"Becoming an Adult: Planning for a Family"

This video focuses on general information about family planning considerations for special needs youth, including those with genetic conditions.

Topics include medication safety in pregnancy, preconception and prenatal genetic screening and testing, and how to access resources such as genetic counselors and maternal-fetal medicine specialists.

"Living with a Genetic Condition: Planning For Your Future"

This video includes a brief review of basic genetics, what it means to have a genetic condition and how to find out more about it.

The importance of continued genetics follow-up in adulthood is emphasized, for both those with a well-described condition and those with a presumed genetic disorder. The video also discusses implications of having a genetic condition with regard to insurance and employment law.

The videos were written and directed by the Division of Transition of Care at Nemours/Alfred I. duPont Hospital for Children. "When a child is diagnosed with a genetic condition, the parents are often given a lot of information to absorb, with the assumption that the child hears and retains this information, too," said Cory Nourie, MSS, MLSP, the Nemours program’s social work coordinator. "The reality is that teens and young adults have many questions about their genetic condition, particularly around family planning, and do not know where to turn for accurate information. The videos are designed to help arm young adults with knowledge about how to reach out to providers for a frank and personal discussion. Empowering young adults to be health literate and informed consumers of health care is the aim of these videos, delivered in an easy-to-understand format."

Please share these videos with young adults, teachers, health care providers and anyone else who may benefit from the information. As part of the Impact Award, we ask viewers to click on the link in the video description to answer a short four-question survey about the videos’ impact and use.

The two Impact Award videos were created as supplements to four previously released videos, funded by NYMAC, and released in December 2013.

The four previous videos are also available online:
  • Legal/Financial: Addressing health care power of attorney, health surrogacy laws and legal guardianship, estate and long-term planning, and special needs trusts.
  • Residential: Discusses the variety of residential programming available to people with disabilities in the adult world and how to make sure young adults are registered with the right services in their state.
  • Vocational: Offers guidance to make sure young adults get the most out of high school and are aware of their options, including post-secondary education, job training programs, day programs and competitive employment.  Vocational rehab services, adult disability resource centers and family-to-family information networks are also addressed.
  • Medical Self-Management: Describes ways for young people to be more involved as they move from the pediatric to adult health care world, including what skills they will need to be successful and how being an adult patient will be different from their pediatric experience.

About Nemours

Nemours is an internationally recognized children's health system that owns and operates the two free-standing children’s hospitals: the Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del., and Nemours Children's Hospital in Orlando, Fla., along with outpatient facilities in five states, delivering pediatric primary, specialty and urgent care. Nemours also powers the world’s most-visited website for information on the health of children and teens,, and offers on-demand, online video patient visits through Nemours CareConnect. Nemours is a program dedicated to preventing reading failure in young children, grounded in Nemours’ understanding that child health and learning are inextricably linked, and that reading level is a strong predictor of adult health.

Established as The Nemours Foundation through the legacy and philanthropy of Alfred I. duPont, Nemours provides pediatric clinical care, research, education, advocacy and prevention programs to families in the communities it serves.