4P-Support Group

The 4P-Support Group is a U.S.-based nonprofit organization dedicated to supporting individuals and families affected by 4p- syndrome, also known as Wolf-Hirschhorn Syndrome (WHS). This extremely rare genetic disorder results from a deletion on the short arm of the fourth chromosome and is characterized by a wide range of physical and developmental anomalies.

Mission and Objectives

The organization's mission is to provide education, support networks, and advocacy for families and guardians of children with WHS. It aims to unite families, researchers, and professionals to promote awareness, understanding, and research into this rare condition. By facilitating national conferences and regional gatherings, the 4P-Support Group fosters a community where families can share experiences and learn from each other.

Activities and Resources

• Support Networks: The group offers a platform for families to connect, share experiences, and receive support from others who understand the challenges of caring for individuals with WHS.
• Newsletters: Regular newsletters keep members informed about updates in medical care, research advancements, and personal stories from families.
• Conferences and Gatherings: Bi-annual national conferences and regional meetings provide opportunities for education, networking, and community building.
• Fundraising Initiatives: The organization engages in various fundraising activities to support its operations and enhance services for members.

Wolf-Hirschhorn Syndrome (WHS)

Wolf-Hirschhorn Syndrome is a genetic condition that affects approximately 1 in 40,000 to 1 in 50,000 live births. It is characterized by significant health issues, including growth and intellectual disabilities, distinctive facial features, and various physical anomalies such as cleft lip or palate and cardiac defects. Despite these challenges, individuals with WHS are often described as happy and loving, with life expectancies increasing due to advanced medical care.

Impact and Achievements

Since its inception, the 4P-Support Group has become a vital resource for over 600 families, with a current active membership of more than 200 individuals living with WHS. The organization's efforts have helped improve awareness and understanding of the syndrome, contributing to improved health outcomes for those affected.