“Our Babies” is a collection of personal stories which we hope will give a positive uplift to those with new babies and small children who have just been given a diagnosis of PWS. This booklet was first produced over thirteen years ago, updated in 2007 with a new generation of our babies and an update on the children that appear in the original edition.
We would now like to update this publication again and this is where you come in! We would like to hear from families who have had babies since 2007 and we are looking for your experiences from the moment when he/she was diagnosed, through the first few years of their life. Your experiences and thoughts could be a lifeline to a family with a new diagnosis.
We need in the region of 300 words from when your baby was diagnosed with PWS, bringing baby home, the first few weeks, the impact on family life, coming to terms with the diagnosis through to where you are now. We would also love a photograph!
Patricia will be contacting you via email or letter if your 2013-14 membership is due over the next few months.
This projects aims is to raise awareness and improve access to specialised services in Wales. To read more click HERE
Be 1 in 2,000; raise your hand for rare diseases at www.raiseyourhand.co.uk for the chance to be featured in a powerful, contemporary art installation. "Rare diseases affect less than 1 person in 2,000, but by coming together we can challenge these previously unchallengeable diseases. Rare Diseases Day 28th February 2014.
You could get Carer’s Credit if you’re caring for someone for at least 20 hrs a week.
This is a National Insurance credit that helps build your entitlement to the basic State Pension and additional State Pension. It makes sure there are no gaps in your National Insurance record. To find our more, please visit the Gov.uk website here: www.gov.uk/carers-credit
There are currently two online surveys concerning research into PWS related matters.
Now available to view and download
4th revision - a guide to the essential features of residential care - is now available.
PWSA UK is proud to be part of the Genetic Alliance's Route Map project.
Stuart Mitchell and David Cottom will be carrying the Olympic flame in July
Help Kenny raise more ...
NHS Choices now have pages of information and a video devoted to PWS on their website. The video features Prof Tony Holland, and one of our parent members, Sharon and her daughter Daisy. It is also accompanied by text about the management and a list of current clinical trials. Please forward the link to anyone you think might be interested.
Aim Awards- Understanding the needs of individuals with Prader-Willi Syndrome
Following a successful pilot course, we are very pleased to offer the above course to anyone working or living with a person with PWS.
It is a recognised unit within the Aim Award (previously known as National Open College Network NOCN) and it is the ONLY specific course on PWS which is externally moderated and accredited.
You may be able to use it as evidence towards other qualifications.
The course covers the following aspects of PWS:
The course is mainly via distance learning, with access to your own personal tutor, who will be a qualified PWSA staff member. However, there will be one day of face to face learning, normally in Derby.
The course fees are £295 for individuals - this includes attendance at the face to face day and all learning materials. It does not include your travel or postage costs. There is a discount for people in groups of 3 or more attending from the same organisation.