Wolfram Syndrome awareness and support
To help spread awareness for Wolfram Syndrome, a very rare genetic disorder that effects 1 in 750000 people! Wolfram syndrome has NO cure and NO treatment.
Wishing all my family & friends wherever they are around the world a very happy new year. Xx
Merry Christmas to everyone! I hope everyone had a happy, safe and joyful Christmas Day filled with love and laughter!
26/09/2022
The presentations from Saturday's virtual conference can now be found on our website - http://wolframsyndrome.co.uk/ws-conference/.
01/09/2022
Here is the mp3 link for the Autumn newsletter - https://www.dropbox.com/s/tubhzdkotujnv3z/Autumn%20Newsletter%20%2337.mp3?dl=0
01/09/2022
Autumn e-newsletter #37🍂 - https://mailchi.mp/5331fb3d9ed0/autumn-e-newsletter-5245488
Autumn e-newsletter #37🍂 I hope that you have all been managing to stay cool in our record-breaking temperatures!! A bit of a change from last Summer. We have been busy over the last few months with fundraising and the employing of some new staff. More about our new staff will be mentioned in the Winter newsletter. There is...
26/08/2022
It’s time to register your place for the International Virtual Conference
Saturday 24th September 2022
PROGRAMME
2.00-2.45 pm (BST) "Therapeutic Development for Wolfram syndrome."
Fumihiko Urano, MD, PhD, Professor of Medicine and Pathology & Immunology
Samuel E. Schechter Professor of Medicine, Division of Endocrinology, Metabolism, and Lipid Research, Washington University School of Medicine
Registration link: https://us02web.zoom.us/webinar/register/4616615085003/WN_V5yKklT2TVy_393sl9LWYg
3.00-3.45 pm (BST) “Progress and progression of Diabetes Mellitus in Wolfram”
Bess Marshall, MD – Professor of Paediatrics, Endocrinology and Diabetes. Co-Director, Paediatrics Office of Faculty Development. Medical Director, Washington University Wolfram Syndrome Research Clinic.
Registration link: https://us02web.zoom.us/webinar/register/7016615088994/WN_Axw0Qdn_Qh-aWGGsb8HdQg
4.00-4.40pm (BST) TREATWolfram Trial Update
Prof Tim Barrett, Dr Renuka Dias and Dr Ben Wright
Doctors from Birmingham Children’s Hospital and University Hospital Birmingham, leading the trial in the UK.
Registration link: https://us02web.zoom.us/webinar/register/8316615093554/WN_xdSewWzkRDeu4oIXYoPr-g
07/07/2022
We will be holding a virtual conference for our global WS community on Saturday 24th September.
Details on how to register will be sent out a month before.
07/07/2022
INVITE TO ATTEND ANNUAL WOLFRAM SYNDROME CONFERENCE!
You are invited to attend our annual conference on Saturday 1st October, at Whittlebury Park Hotel, NR Towcester, NN12 8QH 10.00-17.30 TBC (Registration from 9.00 am).
You will have the chance to speak to medical experts from the UK, as well as the chance to meet other families/individuals affected by WS. There will be workshops as well to take part in.
For more information or to book your place(s) at this face 2 face event, please go to
http://wolframsyndrome.co.uk/ws-conference/
Email: [email protected]
Telephone: 01903 211358
LAST DATE TO BOOK FRIDAY 9TH SEPTEMBER 2022.
Payment for your share of the room costs is due at the time of booking your place. Details can be found on the booking form.