Jean Phillips-Martinsson, founder of the international Prader-Willi syndrome organisation, has died

Jean Phillips-Martinsson, a British-born campaigner who lived for many years in Sweden and later in England, has died. She was a founder of the International Prader-Willi Syndrome Organisation (IPWSO), which brings together families, doctors and researchers connected with a rare genetic condition. The source does not give the date of her death; her life was recounted in an obituary in The Guardian.

A discovery that changed her life

In 1984 Phillips-Martinsson read an article in the medical journal The Lancet about Prader-Willi syndrome (PWS), a rare genetic disorder that causes behavioural and mental health problems, constant hunger and weight gain. It is estimated to affect between one in 15,000 and one in 25,000 people. For 14 years she had been looking for an explanation for her son Anders's health problems. Born in 1970, he was floppy and unable to suck as a baby, and later developed behavioural difficulties and constant hunger. The article's author diagnosed Anders.

Through the endocrinologist Martin Ritzén she met four other families with a child with PWS. A Swedish PWS association was founded in 1986, but she realised that a wider organisation was needed.

Building an international organisation

Phillips-Martinsson contacted PWS groups in other countries and, from 1988, worked with the American geneticist Suzanne Cassidy to plan an international conference. Sponsorship came from the Swedish company Kabi Pharmacia, the World Health Organization and Nato. The conference opened in the Netherlands in May 1991 with 200 delegates from 22 countries, and they voted to create IPWSO. Phillips-Martinsson was its president until 1998.

The organisation held conferences every three years, published newsletters, lobbied for access to genetic testing in underserved countries and in 1992 opened the first residential care facility for adults with PWS, in Sweden.

Life

Born in London, she worked in Paris, as a PR consultant and as a foreign correspondent. In 1962 the Guardian sent her to Gothenburg, where she stayed. She married teacher Sven Martinsson in 1966 and in 1994 moved to Tunbridge Wells in Kent. Sven died in 2008 and Anders in 2019. In 2020 she set up a fund to finance IPWSO's work. She is survived by stepchildren Arne and Karin and many nephews and nieces.