Riddle of the Elephant Man

Riddle of the Elephant Man | Genetic Counselling | Genetic Testing | Find Out More

Dr Martin Brookes

January 2004

Find out more

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Websites

Blazing a Genetic Trail
www.hhmi.org/genetictrail/
A site for anyone interested in the genes that cause genetic disease. With information on current research.

Gene Tests
www.geneclinics.org
Medical database relating genetic testing to the diagnosis, management and genetic counselling of individuals and families with specific inherited disorders.

Genetic Disorder Information on the Web
www.ornl.gov/sci/techresources/
Human_Genome/posters/chromosome/
diseaseindex.shtml#tests
Online guide to genetic disorder resources, with portals that direct users to medical information.

The Genetic Interest Group
www.gig.org.uk
Working to benefit all people affected by genetic disorders, offering a wide range of publications online.

National Organisation for Rare Disorders
www.rarediseases.org
Has an A to Z listing of rare diseases and a rare disease database.

National Society of Genetic Counsellors
www.nsgc.org
The society's mission is to promote the genetic counselling profession as a recognised and integral part of health care delivery, education, research and public policy.

The Neurofibromatosis Association
www.nfauk.org
Offers support and information in the fight against this genetic disease.

The Proteus Syndrome Foundation
www.proteus-syndrome.org.uk
Proteus syndrome is a condition that involves atypical growth of the bones, skin and head, with a variety of other symptoms. The foundation supports all children with this rare genetic disorder.

Books

	Does it Run in the Family? A consumer's guide to DNA testing for genetic disorders by Doris Teichler Zallen (Rutgers University Press, 1997) Provides a guide to hereditary genetic disorders and guidance on questions to ask doctors and genetic counsellors. Through the stories of real families and the choices they made about genetic testing (for diseases such as sickle-cell anemia, Huntingdon's disease and muscular dystrophy) the author helps the readers think through their own alternatives and discuss them with relatives. Get this book
	The Elephant Man by Christine Sparks (Ballantine, 1995) Dramatises the life of Joseph Merrick, who was so hideously deformed that he was exhibited as a freak in a sideshow until befriended by the London surgeon, Dr Frederick Treves. Get this book
	Living with Genetic Disorder: The impact of neurofibromatosis 1 by Joan Ablon (Greenwood Press, 1999) A chronicle of the life experiences of adults with neurofibromatosis 1, a neurological genetic condition for many years misdiagnosed as 'the Elephant Man's disease'. Affected persons deal with an unpredictable and potentially stigmatizing disorder. Get this book
	The True History of the Elephant Man by Michael Howell and Peter Ford (Allison & Busby, 2001) This extraordinary and moving story, set amongst the brutal realities of the Victorian world, tells of a tragic individual, Joseph Merrick, and his survival against overwhelming odds. Get this book

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