Prader-Willi World will permanently cease working on January 1st 2017. This is as a result of the closure of the Parse system on which Prader-Willi World is based. IPWSO greatly regrets any inconvenience that this may cause. Please copy your personal information prior to the closure of PWW by 31 December 2016. To download other information on PWS please see www.ipwso.org
Proudly brought to you by the International Prader-Willi Syndrome Organisation (http://www.ipwso.org).
This application will allow you to:
- Find information on PWS.
- Connect with others and stay in touch with them.
- Receive PWS news immediately.
- Always have key medical information with you and for your professionals at all times
*** ABOUT PWS ***
Prader-Willi syndrome (PWS) is the most common known genetic cause of life-threatening obesity. With early diagnosis and proper management, the health and quality of life of the child with the syndrome can be significantly more positive than in past generations.
PWS is a multiple-system genetically determined variable disorder among whose most prominent characteristics are developmental delay/mild intellectual disability, childhood-onset excessive eating leading to severe obesity if uncontrolled, and behavioral difficulties. In infancy, its most striking finding is severely diminished muscle tone leading to poor sucking and often failure to gain weight and grow properly. The major and minor findings that characterize PWS are detailed below. Several of them are related to alterations in normal brain clues (such as feeling full after eating) or hormone production (such as insufficiency of growth hormone).
The characteristic difficulties seen in people with PWS can be treated, although currently PWS cannot be cured. One of the most important aspects of managing PWS is for parents and caregivers to implement rules and structure for the day for the person with PWS and set consistent limits. Treatment with growth hormone replacement has been shown to help with many aspects of the disorder including improving growth, muscle development, the proportion of fat, weight control, and activity level, and recent evidence suggests it may also improve cognitive ability.
PWS affects males and females of all ethnicities equally in all parts of the world. It occurs in approximately 1 in 10,000 to 30,000 people.
*** ABOUT IPWSO ***
IPWSO is the international non-profit support group for all countries where there is even just one person with PWS! Our international umbrella supports all country PW Associations, and for all countries where there are no formal PW Associations, we support medical and parent delegates as part of our huge community. IPWSO has 102 country members, and is a world-wide parent-led support organisation.
* Improve the quality of life for all people with PWS and their families.
* Foster the foundation and development of new national PWS Associations.
* Encourage PWS associations to exchange and share their PWS projects and experiences.
* Provide education and support on PWS around the world.
* Provide free testing for diagnosis in countries where it is not available.
* Through international conferences provide a forum for communication and collaboration about medical and scientific research advances, caregiver standards, and new therapies and insights for families.
*** SUPPORT ***
App developed by DSR roma (http://www.dsrroma.es).
Please rate our application and feel free to email us about any comments or suggestions for future improvement. In case you face any problems, send us an email (email@example.com) with information about your phone model, and the exact problem, and we'll try to fix it as soon as possible.
If you need support about PWS, please contact IPWSO at firstname.lastname@example.org. Inside the app you can find contact data for your country.