Here is a list of support groups:
Progeria Research Foundation
P.O. Box 3453
Peabody, MA 01961-3453
978-535-2594
progeriaresearch.org
Genetic Alliance
4301 Connecticut Avenue NW, Suite 404
Washington, DC 20008-2369
202-966-5557
geneticalliance.org
National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813
203-744-0100
800-999-6673 (voicemail only)
rarediseases.org
Madison's Foundation
P.O. Box 241956
Los Angeles, CA 90024
Telephone: 310-264-0826
www.madisonsfoundation.org
- The Progeria Research Foundation was founded in 1998 to address the need for information in the progeria community. PRF funds and conducts research, maintains a registry of progeria patients, and forms support chapters throughout the country. Its current chapters are California, , Ohio, Pennsylvania, Southwest Michigan, and Kentucky. Each chapter is led by the family members of a child with progeria. PRF has links on their website to each chapter. PRF seeks to start more chapters and encourages families to contact the organization.
P.O. Box 3453
Peabody, MA 01961-3453
978-535-2594
progeriaresearch.org
Genetic Alliance
- Genetic Alliance, primarily an advocacy organization, works in the area of genetics. Their online roundtable, called MemberForum, provides a place for support group leaders to meet and talk. Genetic Alliance offers one-on-one assistance to help individuals develop support groups and other resources. Genetic Alliance also contracts with the U.S. Department of Health and Human Services to serve as the National Consumer Center for Genetics Resources and Services
4301 Connecticut Avenue NW, Suite 404
Washington, DC 20008-2369
202-966-5557
geneticalliance.org
National Organization for Rare Disorders (NORD)
- The NORD Rare Disease Community provides online connections for those with rare diseases. NORD invites families and caregivers to participate.
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813
203-744-0100
800-999-6673 (voicemail only)
rarediseases.org
Madison's Foundation
- Madison’s Foundation is an online community whose focus is information. They provide support for families whose children have rare, life-threatening illnesses. They connect parents of children with the same disease, provide education and information, and maintain a research database.
P.O. Box 241956
Los Angeles, CA 90024
Telephone: 310-264-0826
www.madisonsfoundation.org
A few movies over the past few years have touched on the subject of Progeria. The Curious Case of Benjamin Button based on the book of Charles Dickens is loosely based on this condition.
Another movie from 1996, Jack is a story about a child who ages progressively fast. While it is again loosely based on Progeria, it does not display the symptoms actually in real life.
Hayley Oakines and her mother wrote a book about life with Progeria. Find out more here: http://abcnews.go.com/Health/progeria-book-time/story?id=15871149