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Prader-willi Syndrome: more books (67)

Prader-willi Syndrome: Coping With the Disease - Living With Those Involved by Urs Eiholzer, 2005-05-31

Prader-Willi Syndrome: A practical guide (Resource Materials for Teachers) by Jackie Waters, 1999-07-01

Management of Prader-Willi Syndrome

Prader-Willi Syndrome: Development and Manifestations by Joyce Whittington, Tony Holland, 2010-12-09

Prader-Willi Syndrome - A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet References by ICON Health Publications, 2004-04-27

Management of Prader-Willi Syndrome

Prader-Willi Syndrome: Development and Manifestations by Joyce Whittington, Tony Holland, 2004-05-24

Babies and Children with Prader-Willi Syndrome: A Handbook for Parents and Carers by Jackie Waters, Margaret Gellatly, 2001-08-01

The Prader-Willi Syndrome

Prader-Willi Syndrome: Selected Research and Management Issues

Prader-Willi Syndrome As a Model for Obesity: International Symposium, Zurich, October 18-19, 2002

Prader-Willi Syndrome: A Handbook for Parents by Shirley Neason, 1985-06

Prader-Willi Syndrome: and Other Chromosome 15q Deletion Disorders (NATO ASI Series / Cell Biology)

Prader-Willi Syndrome: Selected Research and Management Issues

lists with details

Prader-Willi Syndrome Association (USA)
Characteristics include hypotonia, insatiable appetite, obesity if food intake is uncontrolled, hypogonad Category Health Conditions and Diseases praderwilli syndrome
http://www.pwsausa.org/
The Prader-Willi Syndrome Association (UK)
A description of praderwilli syndrome and the Association that supports people and families who deal with it prader-willi syndrome (PWS) is a chromosomal disorder, which can affect people of both sexes and of any race or country.
http://www.pwsa-uk.demon.co.uk/

Extractions: Website@pwsa-uk.demon.co.uk Prader-Willi Syndrome (PWS) is a chromosomal disorder, which can affect people of both sexes and of any race or country. Three Swiss doctors -Prader, Labhart and Willi - first described it in 1956. Some time between the age of one and four, children with PWS develop an increased interest in food, which may become an insatiable obsession. Unless their diet is carefully controlled weight gain can be very rapid, leading to obesity, disease and even an early death. The syndrome has many other characteristics, which result in a complex mixture of strengths and weaknesses. Not everyone with the syndrome is the same, some appearing less severely affected in some areas than others.
Yale WSPWS Program
Diagnostic assessment, selected treatment services and opportunities to participate in research from the Yale University Child Study Center.
http://info.med.yale.edu/chldstdy/wspws
PWSA Of Victoria (Australia) Home Page
Includes details about the organization, a diagnosis/infant guide, a general guide, members stories and links.
http://www.pws.asn.au

Extractions: On this Prader-Willi Syndrome Association of Victoria (Australia) website you will find: Details on our Association, what we offer and how we can be contacted Information for those who have had a recent diagnosis of PWS for your infant or toddler General information about PWS across all age groups A list of books, publications, and tapes available in our Members Library Stories and pictures from some of our members Contacts for other Australian PWS Associations Links to PWS Associations around the world and other useful organisations A link to our community at MC2 (at the top of the page) where you can look at, or post messages to, a forum where parents and others discuss PWS issues. You can also "chat" to others in your situation and find out about events
Ontario Prader-Willi Syndrome Association
OPWSA provides support and information to all those interested in finding out about this syndrome .Category Health Conditions and Diseases prader-willi syndromeWelcome to the Ontario praderwilli syndrome Association. Our mission is toenhance the quality of life for individuals with prader-willi syndrome.
http://members.attcanada.ca/~opwsa/

Extractions: Welcome to the Ontario Prader-Willi Syndrome Association Characteristics Links Publications Health Alerts ... Membership Form The Ontario Prader-Willi Syndrome Association (OPWSA) is a non-profit, charity which was established in 1982. Our mission is to enhance the quality of life for individuals with Prader-Willi Syndrome The association provides essential services to it's membership including: research support and initiatives A news letter is published quarterly A resource centre is maintained which is the most comprehensive source of information on PWS in Canada Our annual conference attracts participants from across Canada. The Ontario Prader-Willi Syndrome Association has a membership of 1000, including individuals with PWS, their families and interested professionals. The Ontario Prader-Willis Syndrome Association is affiliated with PWSA-USA and PWS-international ** To reach the Canadian Prader-Willi Syndrome Organization, please contact: Dianne Rogers, President PO Box 786 , Kensington, PE, C0B 1M0 , call 902-836-4452 or e-mail her at gdrogers@pei.sympatico.ca
Prader-Willi Syndrome
praderwilli syndrome. Who to Contact. Where to Go to Chat with Others
http://www.familyvillage.wisc.edu/lib_pws.htm
Prader-Willi Syndrome Association Of South Carolina
Provides information and networking between parents and professionals to help meet the needs of people affected by praderwilli syndrome.
http://www.midnet.sc.edu/prader-willi/

Extractions: The Prader-Willi Syndrome Association (USA) provides a vehicle of communication for parents, professionals, and other interested citizens. Supported solely by memberships and donations. The Prader-Willi Syndrome Association (USA) has made a diverence in the lives of many affected by this unique syndrome. You, too, can help.
Prader-Willi Syndrome Association Of Ohio -- Growing To New Heights
A nonprofit organization that fosters awareness, supports affected persons and families and encourages research into the causes, management, and cure of the syndrome.
http://www.pwsaohio.org/

Extractions: Support from Experience Central Office 1061 Novak Road Grafton, Ohio 44044 email: pwsaohio@aol.com Education from Professionals Laughter from Love Spotlight Nutrition Information About PWSA of OHIO Mission Statement PWSA of OHIO is a chapter of PWSA-USA and is a non-profit, tax-exempt organization dedicated to providing understanding and awareness of Prader-Willi syndrome, to supporting affected persons and families, to improving the quality of their lives, and to encouraging research into the causes, management, and cure of Prader-Willi syndrome. Organization Structure The organization is maintained by volunteers, mainly being parents of PWS children and adults dedicated to enriching the lives of their children. Officers include President, Vice-President, Secretary and Treasurer. The Board of Directors shall consist of seven members and four officers elected by and from the membership at large. The term of Officers shall be two years. The term of directors shall be 3 years. Elections are generally held on October and the new Board of Directors then begins their office on the first of January the following year. PWSA of OH is a member in good standing and a chapter under the National organization of PWSA-USA. Contacts Vickie Fetsko Phone: (440) 926-1357 email: fetskosv@eriecoast.com
Community Connection: The Prader Willi Syndrome Association - New Jersey Chapter
Includes news, important dates, fund raising, maps and links.
http://community.nj.com/cc/pwsanj

Extractions: PRADER WILLI SYNDROME is a birth defect first identified in 1956 by Swiss doctors A. Prader, H. Willi and A Labhart. There are no known reasons for the genetic accident that causes this lifelong condition which affects appetite, growth, metabolism and behavior. Those affected by the syndrome - about one in 12,000 - are very much alike in their physical symptoms, behaviors and other characteristics. Both sexes and all races are affected. The Prader Willi Syndrome Association provides a resource for education and information about Prader-Willi and support for families, professionals and other interested citizens.
The Syndrome
What is praderwilli syndrome? A disorder of chromosome 15. Prevalence112,000- 15,000 (both sexes, all races). Major characteristics
http://www.pwsausa.org/syndrome/

Extractions: What is Prader-Willi Syndrome? A disorder of chromosome 15 Prevalence: 1:12,000- 15,000 (both sexes, all races) Major characteristics: hypotonia, hypogonadism, hyperphagia, cognitive impairment, difficult behaviors Major medical concern: morbid obesity In light of the report of PWS deaths associated with choking, we think it is important for parents and providers to have knowledge on the Heimlich procedures. The most effective way to learn these methods is to take a CPR course that includes practice of the Heimlich procedures, thus we encourage all to take such a course with frequent reviews. Please remember, it is important to dislodge the food prior to doing CPR Instructions for saving a choking victim using the Heimlich Maneuver
Children's Institute
Pediatric rehabilitation facility offering programs for special education, learning disabilities, praderwilli syndrome, and special needs adoption. Offers inpatient and outpatient services.
http://www.amazingkids.org
OMIM ENTRY 176270
The praderwilli syndrome Association (USA) web site has moved to http//www.pwsausa.org Please update your bookmarks.
http://www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?176270
About The Prader-Willi Syndrome Association (UK)
The praderwilli syndrome Association (UK) - Web page last updated 18th December2001 If you have any suggestions to make about this Web site, please let us
http://www.pwsa-uk.demon.co.uk/pwsauk.htm

Extractions: What is Prader-Willi Syndrome? For those with PWS For Brothers and Sisters Links Who and What the Association is For What the Assoc. Does How the Assoc. Started Who's Who Local Contacts ... Important Milestones The Prader-Willi Syndrome Association (UK) is a special association for people and families affected by the syndrome. Through its members, both affected families and the professionals who help them, it is in-touch with many of the cases of PWS in this country. The Association was formed in 1981, when the syndrome was little known and not always diagnosed easily, and has long experience of providing help and information. The incidence of PWS is very low (estimated to be about one in sixteen thousand births) so that, without the Association, few people involved with the syndrome - the person themselves, parents and siblings, GPs and other medical professionals, care staff and social workers, teachers and therapists, and so on - would have experience of more than one person with PWS. The purpose of the Association is to help eliminate that sense of isolation which they would otherwise experience. Knowing that another family is currently experiencing the problems facing your family, or that they have done in the past, does not take the problem away but it does put it in perspective and makes it easier to bear.
Wonderland Camp For The Physically And Mentally Disabled
Missouri camp provides summer programs for adults and children with physical or mental challenges including MS, multiple dystrophy, cerebral palsy, downs syndrome, praderwilli syndrome.
http://www.wonderlandcamp.org

Extractions: Wonderland Camp is the dream of Charles J. Miller. He worked with the Missouri Jaycees to build a residential summer camp for the mentally and physically challenged children and adults. Today Wonderland is a place where they can enjoy the exhilaration of outdoor living and play together for one magical week. Click here to learn more about Wonderland Camp Camping Programs
Prader Willi Syndrome Q&A
by praderwilli syndrome Association (USA) What is prader-willi syndrome (PWS)?
http://thearc.org/faqs/pwsynd.html

Extractions: What is Prader-Willi syndrome (PWS)? PWS is a complex genetic disorder that includes short stature, mental retardation or learning disabilities, incomplete sexual development, characteristic behavior problems, low muscle tone, and an involuntary urge to eat constantly, which, coupled with a reduced need for calories, leads to obesity. Does the eating problem associated with PWS begin at birth? No, newborns with PWS are typically described as "floppy" and are unable to suck well enough to get sufficient nutrients due to the low muscle tone (hypotonia). Often they must be fed through a tube for several months after birth, until muscle control improves. Sometime in the following years, usually by preschool age, children with PWS develop an increased interest in food and quickly gain excessive weight if calories are not restricted.
The Children's Institute
Rehabilitation facility offering several rehabilitation programs, including special education, programs for learning disabilities and praderwilli syndrome, and special needs adoption.
http://amazingkids.org/index.html?cState=tci
Characteristics Of Prader-Willi Syndrome
Characteristics of praderwilli syndrome. prader-willi syndrome (PWS) is a geneticcondition which is generally caused by a deletion in Chromosome 15.
http://members.attcanada.ca/~opwsa/charac.htm

Extractions: Prader-Willi Syndrome (PWS) is a genetic condition which is generally caused by a deletion in Chromosome 15. There is a close connection between PWS and disturbance of the hypothalamus. The following is an overview of characteristics common to Prader-Willi Syndrome. However, not all symptoms are present in all individuals and the intensity of characteristics varies from person to person. Infancy Underdeveloped genitals Helpful Interventions Most infants will benefit greatly from early interventions with a physio/occupational therapist who can help set up a program to encourage development and provide assistive devices which will help. A nutritionist can provide information about diet, ensuring that adequate calories are provided. As your baby grows, speech therapy may also enhance your child's skills. Most infants with PWS have a happy disposition and respond well to people. Childhood and Adulthood -short stature, small hands and feet
PWSA (USA) Forwarding Page
The praderwilli syndrome Association (USA) web site has movedto http//www.pwsausa.org. Please update your bookmarks.
http://www.athenet.net/~pwsa_usa/
OMIM ENTRY 176270
QUESTIONS AND ANSWERS ON praderwilli syndrome. Table of Contents
http://www.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?176270
Prader-Willi Syndrome Association Of Wisconsin
praderwilli syndrome Association of Wisconsin. The PWSA of WI Web pagehas moved to http//www.pwsausa.org/WI. Please update your bookmark.
http://www.athenet.net/~pwsa_usa/WI/wihome.htm

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