PWS Information Index

Throughout the world Prader-Willi syndrome is believed to be among the ten most common syndromes seen at birth, and is the most common genetic syndrome causing morbid obesity in children. But most people, including many physicians and caregivers as well as new parents and family members are not familiar with this potentially life-threatening, devastating, life-long disorder. In order to help expand the international awareness and support available, we have collated a collection of guides, downloads and informative PWS resources for families, medical professionals and residential caregivers.

• For new parents

• What is Prader-Willi syndrome?

• Growth Hormone

• What are 'behaviours' and how do they challenge?

• "Guide to" series

• "PWS & the Younger Child"  Download booklet

• About schooling

• Dietary management

• Exercise and fitness

• Siblings

• Famcare- caring for the older child at home

• Sexual development

• Fertility, Sexuality & Sex Hormones in Adults with PWS

• Law enforcement

• Health and Wellness

• YouTube

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Resources for parents & families

Medical Professionals

• Evaluation & Review for PWS patients

• New Research papers (updated every quarter)

• Clinical & Scientific Advisory Board

• Clinical Trials

• A-Z Medical issues

• Download Medical Alerts handbook

• Fertility, Sexuality & Sex Hormones in Adults

• Gastro-intestinal problems

• Mental Health in PWS

• PWS Growth Charts

• A Psychiatrist's Primer

• General Health & Wellness

• About the Professional Providers &  Caregivers Board (PPCB)

• Caregiver Delegate Role

• PPCB Conferences

Residential Caregivers

Famcare

Family Care (Famcare) is a board of IPWSO, designed to support families whose adult son or daughter lives at home.

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Futher information

Role of IPWSO Delegates

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Establishing a new PWS Association

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How to become a member of IPWSO

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Looking for further information? Get in touch and let us know how we can help you

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