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Measured By The Soul – book about Joseph Merrick
Joseph Merrick, the Elephant Man, was a 19th century Englishman who suffered disfigurement from an extremely rare disorder, which is believed to be Proteus Syndrome. Though his physical and mental...
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PSF UK have a new Patron
I have some amazing news to share with you all – we have a new patron to sit along side John Hurt. We are very honoured to welcome Joseph Drake to our charity. This is what he had to say: “I recently...
View ArticleResearch and drugs trial update
I attended the Proteus conference in Bethesda, USA from 17 to 19 September 2015. Dr Les Biesecker and his team have been successful in getting agreement to run a drugs trial. You will recall that his...
View ArticleHow to get tested for the AKT1 mutation /get your Proteus diagnosis confirmed
Dr Robert Semple has explained: Any who are interested in genetic testing, especially those who do not have easy access to this through their existing doctors (for example in Manchester or at Great...
View ArticleSegmental overgrowth
Segmental overgrowth – printed with the permission of Mandy Sellars from her website Mandy writes – Back in 2012 I was a patient at Addenbrookes hospital in Cambridge where two amazing doctors, Dr...
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University of Creative arts in Canterbury
Jordan has recently started his second year at the University of Creative arts in Canterbury. He has an adapted flat on campus and he is right near to the city centre. He has made some amazing...
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Patron – Joe Drake
Joe has been a huge benefit to the PSF UK since he joined us as a patron, supporting the Thames 1000 fundraising event. He attended the event and met the participants at the finish line. Joe also...
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Fundraising Update
We would like to thank the Friends of the PSF UK for their regular donations. Mae Stroshane Pickwick Lodge Julia Kobrin David Beere Joseph Drake David Ramsden Samatha Gilmore Debra Catt Paul Kendall...
View ArticleFamily Day 2016
The donations and funds raised by the Thames1000 will allow us to organise a Family weekend in October 2016. Dr Les Biesecker has agreed to attend and in previous years this has been an amazing...
View ArticleArQule receives orphan drug designation for ARQ 092 in Proteus syndrome
ArQule and the National Human Genome Research Institute of the National Institutes of Health Announce Enrollment of First Patient in the Phase 1 Proteus Syndrome Trial With ARQ 092 BURLINGTON, Mass.,...
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