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…Africa. Karin has been a co-opted Trustee of IPWSO since 2022. María Elvira Garcia Ronderos María Elvira was born in Bogotá, Colombia. She is an Industrial Engineer, and specialised in finance and organisational development and is also a Practitioner in Neurolinguistic Programming. She worked for 33 years in different sectors of the economy. She wrote the book “The Smile Thief”, published in 2017, which is the testimony of a family with a special child. She…
…feelings in the knowledge that it isn’t wrong to feel embarrassed, awkward, resentful, or even guilty towards their sister/brother. As the brother or sister grows older, the changes and development in their sibling with PWS will become more obvious and good parenting skills will be called on more and more to settle arguments (“it’s not fair-you always let Jason get away with everything”), and pour oil on troubled waters. When everything seems “unfair”, it’s a…
…to help families manage PWS. Information for Medical Professionals The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS. Information for Professional Caregivers Sharing international knowledge among professional service providers throughout the world. What is PWS? Prader-Willi syndrome is a complex genetic condition. Various studies have shown that between 1 in 15,000 to 25,000 children are born with Prader-Willi syndrome and it affects all races and both…
IPWSO President, Professor Tony Holland, writes about our international advocacy work and asks for your views… IPWSO wants to hear from you – how can we best help raise awareness both nationally and internationally about the needs of people with PWS and that of their families? We have two new initiatives – the IPWSO ECHO® programme and IPWSO’s engagement with Rare Diseases International, Global Genes and other rare disease organisations. With guidance from the ECHO®…
…Annual Report 2016 Annual Report 2015 < Back to About Us International Community IPWSO was established so that PWS associations, families, clinicians and caregivers around the world could exchange information and support and have a united global voice under one umbrella. Information for Families Find useful guides, research and information to help families manage PWS. Information for Medical Professionals The latest medical and scientific research and information, plus guides into common medical issues affecting…
…the world. What is PWS? Prader-Willi syndrome is a complex genetic condition. Various studies have shown that between 1 in 15,000 to 25,000 children are born with Prader-Willi syndrome and it affects all races and both sexes equally. Free Diagnosis If you suspect your patient has Prader-Willi syndrome, based on the clinical signs and symptoms, but are unable to access testing in your country, then you may be able to access free testing. Find support…
…and have been living together for 26 years. Beside these 6 friends, I have many others, without PWS, whom I’ve known since I was born. I still have regular contact with them. We go to the cinema, concerts, musicals, and work on computers, smartphones and tablets together. They always come to my annual birthday party, where I invite them all for fruit salad, light ice-cream and alcohol-free cider. I also have a wonderful Ethiopian girl-friend!…
…love unconditionally and makes you a better human being; that is their mission, ‘to be our teachers.’ Sometimes stubborn, anxious, aggressive, but always loving, transparent in their actions, happy, intelligent, the best gift that God and life have given us. Carlitos is our partner, he likes to hang out with his family and friends, he loves sports, dancing, horse riding, and above all, assemble puzzles! There, he enters in a state of active meditation that…
We are looking for a Fundraising and Communications Manager to join our team. Remote working (must be UK based) £31,000 per annum pro rata (£16,534) Part-time (20 hours per week) Contract (12 months) Closing date is 12 January 2024 at 23:30 (UK time) We’re looking for a talented and motivated Fundraising and Communications Manager who can effectively convey the life-changing impact of our work, motivate our community to donate and fundraise to support our work,…
Find useful guides, research and information to help families manage PWS.
The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.
Prader-Willi syndrome is a complex genetic condition. Various studies have shown that between 1 in 15,000 to 25,000 children are born with Prader-Willi syndrome.