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Research Topics

Little People of America A nonprofit organization that provides support and information to people of short stature and their families. Web site offers a research library, answers frequently asked questions. This is a site for those researching on achondroplasia.

Dwarfism by Betty M. Adelson; Judith G. Hall (Foreword by)
Call Number: 616.4 ADE
Publication Date: 2005

Overview of Adams-Oliver Syndrome

Agenesis of the Corpus Callosum Overview

Overview of ABS

What is Bladder Exstrophy?

United Cerebral Palsy A leading source of information on cerebral palsy, acting as a pivotal advocate for the rights of persons with any disability. One of the largest health charities in the United States, UCP helps advance the independence, productivity and full citizenship of people with cerebral palsy and other disabilities.

Cerebral Palsy by Andrew A. Kling (Editor); Barbara Sheen Busby
Call Number: 616.8 KLI
Publication Date: 2012

Cleft Palate Foundation Web site is divided into two sections, one for patients and families and one of professionals.

Children with Cleft Lip and Palate by Mary Hardin-Jones
Call Number: 618.92 HAR
Publication Date: 2015

The Parents' Guide to Clubfoot by Betsy Miller
Call Number: 617.585 MIL
ISBN: 9780897936149
Publication Date: 2012

Facts About Color Blindness

Cystic Fibrosis Foundation Web site offers comprehensive information about the disease, locations of local CFF chapters and care centers, information about research and clinical trials, and advice on living with the disease.

Cystic Fibrosis by Petra Miller
Call Number: 610 MIL
ISBN: 9781502609403
Publication Date: 2016
Cystic Fibrosis by Maxine Rosaler
Call Number: 616.372 ROS
Publication Date: 2007
Examines cystic fibrosis, explaining what it is, treatment for symptoms, advances in research, and how gene therapy may be used to cure the genetic disease.

Down Syndrome by F. Fay Evans-Martin
Call Number: 618.92 EVA
Publication Date: 2009
Down Syndrome by Philip Margulies
Call Number: 616.858 MAR
Publication Date: 2008
Examines Down syndrome, explaining its history and genetic basis, different aspects of living with the disorder, testing, and genetic research.
Down Syndrome by Dawn Laney
Call Number: 616.888 PER
Publication Date: 2007

Overview of Down Syndrome? This site gives quality information from the US Department of Health.

A Guide to Living with Hypermobility Syndrome / EDS-III by Isobel Knight
Call Number: 616.7 KNI
Publication Date: 2015
This is a print item on Ehlers-Danlos Syndrome.

FRAXA Research Foundation This site focuses on Fragile X Syndrome which provides general information about the defect. Other links are available within this site as well.

Goldenhar Syndrome (Oculo-Auriculo-Vertebral Spectrum)

National Hemophilia Foundation A web site that promotes education, research, and advocacy on behalf of people with bleeding disorders.

Hemophilia by Randall McPartland
Call Number: 610
ISBN: 9781502609441
Publication Date: 2016
Hemophilia by Jeri Freedman
Call Number: 616.157 FRE
Publication Date: 2007
Examines hemophilia, explaining what it is, its history, symptoms, treatment, and research into better ways of treating and possibly curing the genetic disease.

Developmental Dislocation (Dysplasia) of the Hip

Huntington's Disease by Randall McPartland
Call Number: 610
ISBN: 9781502609427
Publication Date: 2016
Huntington's Disease by Johanna Knowles
Call Number: 616.83 KNO
Publication Date: 2007
Examines Huntington's disease, explaining what it is, symptoms, diagnosis, treatment, and efforts to find a cure for the genetic disease.

Hydrocephalus Association A web site that provides information and resources, support, and educational help to patients with hydrocephalus and their parents.

Marfan Syndrome Foundation A group that seeks to disseminate accurate information about this condition to patience, family members, and the health care community; to provide a communication network for patients and their relatives; and to support and foster research.

Muscular Dystrophy Association The Muscular Dystrophy Association is the world’s leading nonprofit health agency dedicated to finding treatments and cures for muscular dystrophy, amyotrophic lateral sclerosis (ALS) and other neuromuscular diseases.

Muscular Dystrophy by Clayton Farris Naff (Editor)
Call Number: 616.7 FAR
Publication Date: 2011
Muscular Dystrophy by Melissa Abramovitz
Call Number: 616.748 ABR
Publication Date: 2008
Provides information on the diagnosis, treatment, and causes of muscular dystrophy, and discusses the Jerry Lewis telethon, drug development, gene therapy, and stem cell research.
Muscular Dystrophy by Paula Johanson
Call Number: 616.748 JOH
Publication Date: 2009
Reviews the history of research into muscular dystrophy, a disease that weakens a person's muscles, discusses the genetic basis of MD, and explains what it is like to live with muscular dystrophy, how it is diagnosed, and how genetic research might affect the future of the disorder.

National PKU News A site that focuses on new and information about the disease. Includes personal stories, research links, and diet-related information, among other features. Located from Magill's Medical Guide

The PKU Paradox by Diane B. Paul; Jeffrey P. Brosco
Call Number: 616.3 PAU
Publication Date: 2013

Sickle Cell Disease by Phill Jones
Call Number: 616.152 JON
Publication Date: 2008
An introduction to sickle cell anemia that discusses the role of protein in the human body, normal and mutant hemoglobins, diagnosis, treatment options, genetics, ethical concerns, and other related topics.
Sickle Cell Disease by Lizabeth Peak
Call Number: 616.152 PEA
Publication Date: 2007
An introduction to sickle cell disease, explaining what it is, discussing its symptoms and complications, diagnosis and treatment, and possible future remedies, and looking at how people cope with the disease.
Sickle Cell Anemia by Judy Monroe Peterson
Call Number: 616.152 PET
Publication Date: 2008
Reviews the history of research into sickle cell anemia, a blood disease that deprives the body of oxygen and hinders the removal of waste products from cells, discusses the genetic basis of sickle cell anemia, and explains what it is like to live with the disease, and how genetic research might affect its future.

Spina Bifida Association Promotes the prevention of spina bifida and strives to enhance the lives of all affected. Offers a newsletter, physician referrals, and scholarship funds, among other services. Located from Magill's Medical Guide

Spina Bifida by Stephanie Watson
Call Number: 618.927 WAT
Publication Date: 2009
Reviews the history of research into spina bifida, a developmental birth defect which results in various degrees of disability, discusses the genetic basis of the disease, and explains what it is like to live with spina bifida and the search for a cure.

National Tay-Sachs and Allied Diseases Association National Tay-Sachs & Allied Diseases Association (NTSAD) is one of the oldest patient advocacy groups in the country. The web site focuess on funding research, supporting over 500 families and individuals worldwide, and raising awareness to prevent disease.

Tay-Sachs Disease by Randall McPartland
Call Number: 610
ISBN: 9781502609465
Publication Date: 2016
Tay-Sachs Disease by Jeri Freedman
Call Number: 618.92 FRE
Publication Date: 2009
Tay-Sachs Disease by Julie Walker
Call Number: 618.928 WAL
Publication Date: 2007
Examines Tay-Sachs disease, explaining what it is, how it is inherited, treatment of symptoms, and screening and prevention.

Tethered Cord Syndrome

Cooley's Anemia Foundation Provides information for patients and their families, medical personnel, donors, and anyone interest in learning about Cooley's Anemia and other forms of thalassemia.

Tourette's Syndrome Association, Inc. A group supporting advocacy, education, and research about this disorder.

Tourette Syndrome by Marlene Targ Brill
Call Number: 616.8 TAR
Publication Date: 2012
Tourette Syndrome by Mary E. Williams
Call Number: 616.8 WIL
Publication Date: 2012
Tourette Syndrome by Sheila Wyborny
Call Number: 616.83 WYB
Publication Date: 2010
An overview of Tourette's syndrome that discusses what it is, diagnosis, treatments, personal challenges people with the disorder face, research, and other related topics.

Evaluated Web Sites

EyeSmart
This web site provides information about eye health from the American Academy of Ophthalmology.
Mayo Clinic
The top hospital in the United States provides resources for a variety of diseases, disorders, and common health issues.
MedLinePlus
General medical database, covers a variety of disorders
National Institute of Neurological Disorders and Strokes
The National Institute of Neurological Disorders and Stroke conducts and supports research on brain and nervous system disorders.
National Organization of Rare Diseases
This site is the organizational site for many rare diseases, including many birth defects.
Genetics Home Reference, U.S. National Library of Medicine
Reference guide to understanding a variety of genetic conditions

Birth Defects Research Project: Home

Birth Defects Research Paper Requirements

Databases

Formatting your paper and writing MLA citations

Research Topics

Evaluated Web Sites