1. 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/

2. 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/

Please note we have a Address ! PWSA (UK) 125a London Road Derby DE1 2QQ England Tel: 01332 365 676 Fax: 01332 360 401 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. A Description of PWS An A to Z of PWS The Genetics of PWS Dietary Management in PWS ... e-mail us The PWSA (UK) is the only organisation in the UK and the Republic of Ireland to address the unique needs of people with PWS, their parents, carers, enablers, and professionals from health, education and social services who work with them.

3. 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

4. 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

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 Prader-Willi Syndrome Association of Victoria Inc ABN 93 836 682 679 We wish to thank for their wonderful support of this site. Privacy: We have no means of identifying you whilst visiting this site. It will be your decision whether to contact us or not.

5. 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 syndrome......Welcome 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/

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: information and referrals advocacy initiatives establishment of support groups education and awareness programs 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

6. 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 Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search AltaVista for "Prader-Willi Syndrome" Who to Contact The Prader-Willi Syndrome Association (USA) 5700 Midnight Pass Rd. Sarasota, Fla 34242 Toll-Free: (800) 926-4797 Tel: (941) 312-0400 Fax: (941) 312-0142 E-mail: pwsausa@aol.com Web: http://www.pwsausa.org/ The Prader-Willi Foundation 223 Main Street Port Washington, N.Y. 11050 (516) 944-3173 - fax E-mail: PWSyndrome@aol.com Where to Go to Chat with Others Ontario Prader-Willi Syndrome Assoc., "Health Talk" The Prader-Willi Syndrome Association (USA) Chat Room Learn More About It Basic Facts and Medical Alert Prader-Willi Syndrome - From PedLynx Prader-Willi Syndrome - From GenClinics Prader-Willi Syndrome - From OMIM ... Questions and Answers about Prader-Willi Syndrome From the Arc The genes involved in PWS and Angelman Syndrome Web Sites Prader-Willi Syndrome Association (USA) Web Site Prader-Willi Syndrome: A Family's Story Ontario Prader-Willi Syndrome Association Prader-Willi Syndrome Association of the United Kingdom Back to [ O - P Family Village Home Library Coffee Shop ... Information Last Updated 9-August-1999 by rowley@waisman.wisc.edu

7. 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/

Prader-Willi Syndrome Association of South Carolina W. Rhett Eleazer, President 1817 Pickens Street Columbia, S.C. 29201 Email: Prader-Willi Association of S.C. Mission Our mission is to provide information and networking between parents and professionals to help meet the needs of people affected by Prader-Willi Syndrome and their families, care givers, teachers, doctors, etc. Goal Our goal is to establish an ongoing list of professionals, doctors, genetic clinics as well as a list of parents who wish to be in touch with other parents, and support the Prader-Willi Syndrome Association of South Carolina and the National Prader-Willi Association. About Prader-Willi Syndrome PWS is a birth defect. There are no known causes for this genetic accident that causes this lifelong condition that affects about one in 15,000. Both sexes and all races are affected. There is no cure yet, only treatment. PWS Characteristics include short stature, mental retardation or learning disabilities, incomplete sexual development, low muscle tone and a constant urge to eat. Individuals affected to not metabolize calories normally and that leads to obesity in most cases. Individuals are very much alike in their physical appearance and behaviors that include poor gross motor skills, speech and language difficulties, cognitive limitations, mood swing, behavior problems, high pain threshold, skin picking, and dental problems. Contributions 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.

8. 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/

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

9. 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

The Prader Willi Syndrome Association - New Jersey Chapter If you would like to receive a copy of our February Newsletter please let us know your name and address. The Prader Willi Syndrome Association, NJ Chapter is formed to provide support to parents and individuals with Prader-Willi Syndrome. We strive to help educate both educators and the medical field on the needs of people with PWS. We hold two meetings a year with featured speakers on Prader Willi Syndrome and related areas. We try to be involve politically for persons with PWS and to assist in their life's planning. We are part of the Prader Willi Syndrome Association USA which provides us with educational materials and coordinates research on PWS. 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 NJ Chapter -PWSA web site is intended to provide information only - not to diagnose or advocate particular treatment options. Individuals should only make decisions about treatment options and diagnoses in close collaboration with their own health care team of professionals.

10. 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/

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 Frequently Asked Questions about PWS Basic Facts about PWS Medical Alert ... A Comprehensive Team Approach to the management of Prader-Willi Syndrome Pharmacia PWSA(USA) D isclaimer Email PWSA(USA) Email Membership Additions/Changes ... Email Webmaster

11. 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

The Children's Institute Programs Diagnoses Clinical Services ... http://www.amazingkids.org 6301 Northumberland Street Pittsburgh, Pennsylvania 15217. Email: sjo@the-institute.org Tel: 412-420-2400 Non-Discrimination Policy

12. 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

13. 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

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.

14. 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

Welcome to Wonderland Camp A Special Camp for Special Friends On the Lake of the Ozarks W onderland Camp is dedicated to serving mentally and physically challenged individuals of all ages for over 30 years. About Us 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 We offer summer camp programs from the end of May through August. Campers can enjoy the beauty of the outdoors, develop friendships, and participate in special events. Click here to learn more about our camping programs or to register Be a Camp Counselor Looking for a fun and rewarding summer job? Click here to learn more about working as a camp counselor or other camp staff position Sponsorship Opportunities Help bring the joy of summer camp to a special needs child or adult. Click here to learn more about

15. Prader Willi Syndrome Q&A by praderwilli syndrome Association (USA) What is prader-willi syndrome (PWS)? http://thearc.org/faqs/pwsynd.html

Prader-Willi Syndrome by Prader-Willi Syndrome Association (USA 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 PWS run in families? Although PWS is associated with an abnormality of chromosome 15, it is generally considered not to be an inherited condition, but rather a spontaneous genetic birth defect that occurs at or near the time of conception. PWS is found in people of both sexes and all races. How common is this problem? About 1 in 14,000 people in the U.S. are estimated to have PWS, and the birth rate may be even higher. Prader-Willi syndrome is one of the 10 most common conditions seen in genetics clinics and is the most common genetic cause of obesity that has been identified. 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.

16. 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

17. 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

Characteristics of Prader-Willi Syndrome 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 Hypotonia (Weak muscle tone) Feeding problems because of poor sucking ability 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

18. 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/

The Prader-Willi Syndrome Association (USA) web site has moved to: http://www.pwsausa.org Please update your bookmarks.

19. OMIM ENTRY 176270 QUESTIONS AND ANSWERS ON praderwilli syndrome. Table of Contents http://www.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?176270

20. 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

Prader-Willi Syndrome Association of Wisconsin The PWSA of WI Web page has moved to: http://www.pwsausa.org/WI Please update your bookmark.

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