Are you aware of this #Rare? | Wolfram Syndrome UK Virtual Conference 2020 | 19th and 26th September


The only charity and website in the UK for this condition

Earlier in the year I met Tracy Lynch CEO & Co-Founder of Wolfram Syndrome UK charity at an event by Findacure where I got to learn about her charity and these 2 days of events that they have coming up.

One of our roles here at FibroFlutters is to support Rare Diseases and help to raise awareness for charities like the Wolfram Syndrome UK charity, which is small and our hope here is to help project their voices further to help reach those who may not be aware that they exist and provide help for families living and caring for children and family members with this condition in the UK.

Aside from that they also fundraise to help boost the opportunity of much needed research into the condition which currently does not have a cure and without research one is not likely to be found.

Zebra Strutters the rare disease arm of FibroFlutters coming to you very soon


What is Wolfram Syndrome?

Wolfram Syndrome is a rare genetic disorder which is also known as DIDMOAD syndrome after its four most common features:

Diabetes Insipidus

Diabetes Mellitus

Optic Atrophy

Deafness

Other related health problems relating to:

Renal Problems

Neurological Problems

  • 3/4 of patients get Diabetes Insipidus
  • 2/3 become deaf in their teenage years.
  • 2/3 experience renal problems in their twenties and a similar proportion get neurological complications in their thirties.
  • However, there appears to be a subgroup of patients who run a milder course and don’t have these additional complications

Wolfram Syndrome UK Virtual Conference 2020

Please find details below of the proposed Agenda for this year’s Virtual Conference.

This may be subject to change depending on circumstances. Registration details have been sent out via email and social media, as well as being listed below by the Wolfram Syndrome UK charity.

Please note that you will need to register for the webinars in advance!


Saturday 19th September

2.00-3.00pm Urology Presentation

Mr Liam McCarthy (Birmingham Children’s Hospital).

Register in advance for this webinar:

https://us02web.zoom.us/webinar/register/WN_3WcmRvnjTqubb0VPETSnLg


Saturday 26th September

1.00-2.00pm Lifelong treatment with GLP1 receptor agonist in rat model of Wolfram syndrome

Drs Mario Plass and Anton Terasmaa from Estonia.

Register in advance for this webinar:

https://us02web.zoom.us/webinar/register/WN_WyledI0sTqyBHIURjHClFw


2.15-3.00pm TREATWolfram Update

Dr Ben Wright (QEH), Dr Renuka Dias (BCH) and Prof Tim Barrett (BCH) – TBC.

Register in advance for this webinar:

https://us02web.zoom.us/webinar/register/WN_YS5xvSiLQSCLKFM0kyKwqQ


3.15-4.00pm Optic nerve involvement in Wolfram syndrome

 Dr Patrick Yu Wai Man (Cambridge University Hospital)

Register in advance for this webinar:

https://us02web.zoom.us/webinar/register/WN_NzgTETeoS1OvslhJ5Ai8iQ


You can donate to Wolfram Syndrome UK now by clicking one of these buttons. Thank you

virginmoneygiving.com – Donate to Wolfram-Syndrome UK
totalgiving.co.uk – Donate to Wolfram-Syndrome UK


Tracy Lynch

CEO & Co-Founder

CEO & Co-Founder

9 Church Way, Worthing, West Sussex. BN13 1HD.

Tel: 01903 211358

www.wolframsyndrome.co.uk

Registered Charity Number: 1152445. Registered as WOLFRAM SYNDROME UK . Registered in England & Wales.



Where to find other resource information about this condition >




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from the administrator – fibrofly73 aka Carole



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