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

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.

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

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

Birmingham Women’s and Children’s NHS Foundation Trust

TYPES OF DIABETES | Wolfram Syndrome | Diabetes.co.uk

WellChild | National UK children’s charity

NORD – National Organization for Rare Disorders

National Library of Medicine (NLM) will no longer offer Genetics Home Reference

Genetic and Rare Diseases Information Center (GARD)

Research | Open Access | Published: 31 July 2019 | Orphanet Journal of Rare Diseases | DOI: https://doi.org/10.1186/s13023-019-1149-7
A cost of illness study evaluating the burden of Wolfram syndrome in the United Kingdom

Many thanks for reading and I hope you find the charity useful for you. Please sign up for the webinars and show some support and share the rare!