Providing support to families and individuals with 4p- and Wolf-Hirschhorn Syndrome

Our Mission

Supporting individuals with a 4th chromosomal deletion and providing their families with information, education and support; uniting families, researchers, and professionals; and promoting awareness, understanding and research of 4p- syndrome, with Wolf-Hirschhorn Syndrome as the main condition.

A 501©(3) Organization, welcoming parents, foster parents, and relatives, as well as professionals

Learn more about 4p- Support Group

What Is WOLF-HIRSCHHORN SYNDROME (WHS)

In basic terms, Wolf-Hirschhorn Syndrome (WHS), also known as 4P- Syndrome, is caused by distal deletion of the short arm of the 4th chromosome, with an occurrence of 1 in 50,000 live births. 

The syndrome is associated with mental and physical delays in children and adults. However, most individuals with this rare syndrome display
loving and engaging personalities with life expectancies from newborn to middle age.

Characteristics of WHS include:

Slow Growth

Developmental Delays

Cranial/Facial Distinctions

Closure Defects Including Cleft Lip or Palate

Cardiac Issues

Low Muscle Tone

Kidney Defects

Microcephaly

Seizures

We just got a diagnosis - What should I do?

Frequently Asked Questions

4p- is a deletion on the short arm of the 4th chromosome commonly leading to Wolf-Hirschhorn Syndrome with an occurrence in every 1 in 40,000 births. Wolf-Hirschhorn Syndrome (WHS) is diagnosed when the critical region of the short arm of the 4th chromosome, 4p16.3 is missing. WHS can lead to developmental delays as well as several medical complex issues.

Although ALL individuals affected by 4p- and WHS will have some form of medical issue, our loved ones are very social and happy. The issues will vary from person to person but the following are the most common traits of WHS.

The life expectancy for WHS children is unknown. The mortality rate is lower than once thought. The oldest member of our group was born in 1949, and several are in their 30’s and 40’s. There have been great advances in medical care and treatments that have enabled our kids to live longer, happier lives.

Major symptoms may include severe growth and intellectual disability, microcephaly, “Greek Helmet” faces, and closure defects (cleft lip or palate, coloboma of the eye, and cardiac septal defects) and other physical disabilities .

The effect on our children varies widely. Some can walk, talk and assist in their daily care while others are non verbal and require constant care. Some are near normal height and weight, while others at ages 20-30 weight only 35-50 lbs and are only 45-55 inches tall. Medical intervention can be minimal for some but very complex for most.

However, a common trait seems to be that our children are (for the most part) happy, loving children. We have some sayings in our group; “never say never”, “let your child show you what they can do” and “everything is in their own timing”.

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About Us

The 4p- Support Group is a non-profit organization for families and guardians of children with 4p-.  Our organization offers support networks, newsletters, bi-annual national conferences and regional gatherings.

We welcome parents, foster parents, relatives, and professionals working with 4p- children and their families. 

Reach out if you have any questions!