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Publications About CdLS

Publications About CdLS

From the earliest days, a hallmark service of the CdLS Foundation has been its range of materials for parents, professionals and the public.

Since the first issue of Reaching Out in 1977, the Foundation has kept its constituency up-to-date on issues relevant to the syndrome through various publications, articles and other materials.

In addition to Reaching Out (published quarterly), the Foundation produces several other publications. These include Facts about CdLS, Facing the Challenges, and our new parent packet, Starting the Journey: Information and Support for New Parents.


Request Publications from the CdLS Foundation »

Recommended reading for parents/caregivers:

Starting the Journey:
Information and Support for New Parents
 

This packet of basic information helps you and your child—no matter how old he or she is—receive the best care possible. It addresses topics related to growth and feeding, education, genetic information, and much more.

Request a copy of Starting the Journey »

Facts About CdLS brochure       

This brochure provides answers to some of the most frequently asked questions about CdLS.

Download a copy of the Facts About CdLS brochure»

Management and Treatment Guideline Cards 

The treatment guideline cards highlight routine care for people with CdLS at different ages, including infancy, early and late childhood, adolescence, and adulthood.

Request a copy of Management and Treatment Guideline Cards »

Reaching Out

The quarterly newsletter—published continuously since 1977—contains relevant and timely information for families, caregivers and professionals. Each issue covers medical, behavioral and/or educational issues that are specific to individuals with CdLS. The magazine-style publication also highlights research news, events and personal stories from families and caregivers.

View previous issues of Reaching Out below:

Critical Care Information

Since Foundation staff can’t always be accessible by phone in an emergency, the following materials provide guidance to medical personnel during critical times.

View Critical Care Information »

New Family Newsletter

A compilation of articles written by parents, doctors and others, offering information and support.

Request a copy of the New Family Newsletter »

 

Recommended reading for relatives and friends:

A Booklet for Grandparents

Grandparents share words of wisdom and personal stories about how CdLS affects their families.

Request a copy of A Booklet for Grandparents »

Facts About CdLS brochure

This brochure provides answers to some of the most frequently asked questions about CdLS.

Download a copy of the Facts About CdLS brochure»

Reaching Out

The quarterly newsletter—published continuously since 1977—contains relevant and timely information for families, caregivers and professionals. Each issue covers medical, behavioral and/or educational issues that are specific to individuals with CdLS. The magazine-style publication also highlights research news, events and personal stories from families and caregivers.

View previous issues of Reaching Out below:

Foundation Focus

Foundation Focus is a semiannual newsletter specifically for donors and friends of the Foundation. It takes a deeper look at various aspects of the Foundation, including "Super Siblings," event highlights, fundraising spotlights and donor profiles.

 

Articles About CdLS

CdLS-related articles covering various topics such as medical, behavioral and educational issues that are specific to individuals with CdLS are available to download below.

Anesthesia

Behavior

Cardiology

Causes of Death

Dental

Development

Education

Estate Planning

Eyes, Ears and Nose

Family and Emotional Issues

Feeding and Gastroesophageal

Genetics and Diagnosis

Gynecology

Immunodeficiency

Neurology

Nutrition

Orthopaedics

Sensory Issues

Sleep

Speech & Language

Therapies

Transition

Información en Español

Awareness Materials

Media Room

Visit the Media Room to view CdLS Foundation press releases, CdLS-related news coverage and our Press Kit for downloadable images and quick facts about CdLS.