Applying for Benefits If You Have Cornelia de Lange Syndrome

Learning that your child has a serious medical condition can be devastating for parents who aren’t usually expecting to face problems during the delivery of their newborn. A diagnosis of Cornelia de Lange Syndrome can cause heartache and uncertainty. Whether your doctor discussed the condition with you during your prenatal care or wasn't able to make the diagnosis until after your child's birth, the news can be quite shocking. A comprehensive treatment plan for your child will likely be expensive, and many parents wonder how they'll be able to adequately provide for their child's special needs.

Social Security (SS) Disability programs from the Social Security Administration (SSA) may be able to help. Not only do patients with the classic form of Cornelia de Lange Syndrome usually qualify for SS benefits, they're also often eligible for expedited application processing under the SSA's Compassionate Allowance Program.

What Is Cornelia de Lange Syndrome?

Named for the Dutch pediatrician who first diagnosed the condition, Cornelia de Lange Syndrome is a very rare genetic disorder that occurs in an estimated one in every 10,000 live births. It affects infants of both genders, as well as those from all races and ethnic backgrounds.

The disorder affects multiple body systems, causing a wide range of physical, cognitive, and behavioral challenges. The physical characteristics in children with Cornelia de Lange Syndrome include:

  • Low birth weight
  • Small head size
  • Poor growth
  • Cardiac septal defects
  • Genital abnormalities
  • Missing forearms or fingers
  • Low set ears
  • Bushy eyebrows that join in the middle
  • Upturned noses
  • Widely spaced teeth
  • Excessive body hair
  • Thin, down-turned lips


Children, adolescents, and adults with Cornelia de Lange Syndrome can also suffer from:

  • Feeding difficulties
  • Developmental delays, including serious intellectual disabilities and limited language
  • Behavioral issues, including those similar to severe autism such as self-stimulation, hyperactivity, and self-destructive tendencies
  • Seizures
  • Hearing loss
  • Vision abnormalities
  • Severe gastroesophageal reflux


While there is no cure for the genetic disorder, there are a number of treatments available to help manage the individual symptoms and health problems associated with Cornelia de Lange Syndrome.

Applying for SS Benefits

Because many individuals with the classic form of Cornelia de Lange Syndrome are unable to feed or care for themselves, applying for SS Disability to provide benefits for people with the condition is relatively simple and straightforward. The SSA requires that applicants submit the following information, along with the completed application form:

  • Clinical examination history describing the diagnostic features and physical findings of Cornelia de Lange Syndrome
  • Laboratory findings from the child's pediatrician or adult’s doctor, confirming the diagnosis
  • Developmental assessments and psychological testing addressing the individual's mental impairments


Because the SSA recognizes the severity of the condition, the agency has placed the classic form of Cornelia de Lange Syndrome on its list of impairments that qualify for the Compassionate Allowances Program, and applications for benefits are expedited. This can be especially helpful for parents who need additional money to provide their child with necessary treatment. The expedited processing means that applicants are usually approved for benefits in a matter of weeks, versus a period of months to years.

Do You Need Help Applying for SS Benefits?

Even with the promise of expedited application processing, there can be frustrating delays when applying for SS benefits. Working with an experienced disability attorney can help ensure that you provide the SSA with the information they need in a timely fashion. For more information on applying for SS benefits, contact Keefe Disability Law to receive a free, no-obligation evaluation of your case, or request a free copy of our book, The Five Most Frequently Asked Questions About Social Security Disability.

Are You Looking for a Social Security Disability Attorney in Boston, MA?

If you are looking to apply for social security disability, you need to speak with an experienced social security disability lawyer as soon as possible. Please contact us online or call our Natick Office directly at 508.283.5500 to schedule your free consultation.


John L. Keefe
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Founding Attorney, Massachusetts Social Security Disability Lawyer