The mission of FPWR UK is to eliminate the challenges of Prader-Willi through the advancement of research #PWS #praderwilli
UK
Joined July 2010
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Foundation for Prader Willi Research UK retweeted
Speech can be affected by changes in the 15q region.
#15q
Foundation for Prader Willi Research UK retweeted
The majority of 15q cases happen spontaneously & your chances of having another child with that condition are as low as the rest of the population. However, some cases can be passed through families. It is advisable to speak about your individual case with a Geneticist.
#15q
Foundation for Prader Willi Research UK retweeted
Issues with behaviour are common across 15q conditions but with some variations between the different conditions.
#15q
Foundation for Prader Willi Research UK retweeted
15q conditions also are classed as Rare Diseases, which according to the UK Government means a Disease that affects less than 1 in 2000 people.
#15q #15qawareness #praderwillisyndrome #angelmansyndrome
#dup15q
Foundation for Prader Willi Research UK retweeted
From tomorrow we will start our countdown to 15q Day on November 15th.
You can get your own profile frame by emailing [email protected] with the photo you’d like to use.
Foundation for Prader Willi Research UK retweeted
Our Clinical Trials webinar is next Tuesday (10th September 2024) at 7:30pm. Hear directly from the Pharmaceutical Companies, Acadia, Aardvark, Harmony Biosciences and Soleno and ask any questions you may have. You can sign up at pwsstrongertogether.co.uk/We…
@FPWRUK @PWSAUK
Foundation for Prader Willi Research UK retweeted
We are pleased to invite you to our research update. Four pharmaceutical companies will present the latest progress in their clinical trials in the UK with a Q&A opportunity afterwards. Join us via Zoom on 10th Sept at 7:30pm.
Reserve your spot at
🔗 bit.ly/3A6liXp
Foundation for Prader Willi Research UK retweeted
Thank you for following our posts today and to RARE Rev Magazine for giving us this opportunity. We'd love to stay in touch so please follow us @FPWRUK, check out fpwr.org.uk and sign up for our newsletter at link.fpwr.org.uk/newsletters… #fpwruk #tuesdaytakeover #pws
Foundation for Prader Willi Research UK retweeted
PWS can present many obstacles but when you meet someone with PWS you will be meeting someone with courage, resilience, and a loving and amazing personality. Here are some of our PWS Community facing their challenges and taking on the world! #fpwruk #takeovertuesday #pws @FPWRUK
Foundation for Prader Willi Research UK retweeted
The Global PWS Registry contains questionnaires on all areas of PWS to be completed by patients and caregivers. The anonymous data is then used by Researchers and Doctors to get a worldwide, real life picture of PWS #fpwruk #takeovertuesday #praderwillisyndrome #pws @FPWRUK
Foundation for Prader Willi Research UK retweeted
Our aim is to eliminate the challenges of PWS through the advancement of research and therapeutic development. We are a small charity and predominantly run by family members of people with PWS. We believe research is the key to a brighter future for PWS. @fpwruk #takeovertuesday
Foundation for Prader Willi Research UK retweeted
#PWS can have many symptoms and affect many areas of the body. It is important to remember PWS is a spectrum condition and not everyone will experience the same symptoms or at the same severity. Symptom severity can also change over time. #fpwruk #praderwillisyndrome @FPWRUK
Foundation for Prader Willi Research UK retweeted
Prader Willi Syndrome is a genetic condition caused by missing information on chromosome 15. It affects around 1 in 22,000 people. Please visit our website for lots more information on PWS at fpwr.org.uk/what-is-prader-w… #fpwruk #takeovertuesday #praderwillisyndrome #pws @FPWRUK
Foundation for Prader Willi Research UK retweeted
Thank you RARE Revolution Magazine for this #tuesdaytakeover. We're Foundation for Prader Willi Research UK or @FPWRUK. We'd like to tell you more about ourselves and our work into furthering research into Prader Willi Syndrome. #fpwruk #takeovertuesday #praderwillisyndrome #pws
Foundation for Prader Willi Research UK retweeted
We’re almost a quarter of the way around our virtual route. Well done to everyone taking part. Please keep logging those minutes at pwsstrongertogether.co.uk/co…
Foundation for Prader Willi Research UK retweeted
How are you doing Move it May? How's it going? Any type of movement counts, it's the minutes spent we need. Can we collect 59,000 minutes together through May? Log you minutes at pwsstrongertogether.co.uk/mo…
#pwsstrongertogether #moveitmay
Foundation for Prader Willi Research UK retweeted
We’ve made a great start on the #moveitmay challenge. Please keep recording those minutes so we can continue our virtual journey around the #gloworange landmarks 🧡
Foundation for Prader Willi Research UK retweeted
Are you hoping to visit one of our Glow Orange sites?Or are you going to Glow Orange at home? We have glowsticks for sale to help you get glowing.Head to fpwr.org.uk/shop for your orange merchandise.All profits from Orange merchandise this May go to PWS Stronger Together.
Foundation for Prader Willi Research UK retweeted
We're off! Our #moveitmay challenge has begun. We are starting off at the Spinnaker Tower, Portsmouth. Can you help us make it virtually around our 30 Glow Orange landmarks this May. Find out more at pwsstrongertogether.co.uk
#pwsstrongertogether #moveitmay
