What Are Some Support Groups for Progeria?

Progeria, also known as Hutchinson-Gilford Syndrome, is a rare disease which affects children. The genetic condition is considered fatal and causes a host of serious and life-threatening illnesses and conditions. Children with progeria have physical characteristics associated with aging. Progeria occurs in one of every four million to eight million births. Because the disease is so rare, parents find it difficult to locate support groups. The national organizations maintain registries and some perform "parent matching," helping to connect parents. Online support groups address the lack of community-based groups.

Progeria Research Foundation

• 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, Michigan, 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.

  Progeria Research Foundation, Inc.
  P.O. Box 3453
  Peabody, MA 01961-3453
  978-535-2594
  progeriaresearch.org

Progeria.be

• Progeria.be is the web site of a family whose children have progeria. This site lists other sites of families--including the chapter sites for the Progeria Research Foundation--and links to services in other countries. Progeria.be tracks information about families around the world and posts it to this site. The site invites other families to get involved.

  Progeria.be
  progeria.be/index_EN.php

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

  Genetic Alliance
  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.

  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

• 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.

  Madison's Foundation
  P.O. Box 241956
  Los Angeles, CA 90024
  Telephone: [phone]
  www.madisonsfoundation.org