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All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions

News update courtesy of Genetics Alliance UK. 

Read more: All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions

Sally Webster acknowledges achievement of LeJog Cyclists

A formal word of thanks from Sally Webster, Chair Gorlin Syndrome Group. 

Read more: Sally Webster acknowledges achievement of LeJog Cyclists

Dental Cone Beam CT -v- Convential CT Scans

Dental Cone Beam CT is an alternative to conventional CT scans for individuals with Gorlin Syndrome.

Read more: Dental Cone Beam CT -v- Convential CT Scans

Successful completion of LeJog Cycle Ride

5 very happy but tired cyclists crossed the finish line at 4.00 pm on 17th Sept 2017. 

Read more: Successful completion of LeJog Cycle Ride

Cyclists arrive in Scotland

Lands End to John O'Groats (LEJOG) arrive in Scotland.

Read more: Cyclists arrive in Scotland

On Route to John O'Groats

Schedule of 9 days to complete 1000 miles from Lands End to John O'Groats.

 

Cyclists pictured just before leaving Lands End on 9th September. Each of the cyclists are raising funds for various charities.

For David Rowley he chose to support the Gorlin Syndrome Group as his son is diagnosed with the condition. 

David is keeping us updated with progress on a daily basis and some of his recent posts to the Gorlin Syndrome Group Facebook group give an indication of the commitment and energy required to see the challenge through. 

David's post on the first day ' Day 1 complete and we are through Cornwall and in to Devon! Big first day but the group smashed it.'

The following day further news came in 'Day 2 complete and the two toughest days out of the way. Two of the biggest hills of the trip Cheddar Gorge and Cothelstone Hill also complete. All the team feeling good and we are now enjoying the facilities of Hilton Bath so all in all not a bad day. I am really pleased to announce that I have now raised over £2000 for the Gorlin Syndrome Group but I am still raising. I would be really be grateful if any who has not already could sponsor me. Huge thank you for reading!'

Monday news 'Another day down and another 90 miles under the belt. The heavens opened in Bath but thankfully the sun came out. We are now at Kidderminster and making good progress. Tomorrow is Haydock near Manchester. Everyone in great spirits and feeling good after day 3. 

We look forward to further updates from David and intend to keep you all informed so keep checking out for news as it comes in. 

Interested in reading more about David's decision to support us then you can access his page here.

 

 

Relive 'Morning Ride'
RELIVE.CC

 

 

 

 

 

Early Start for the Lands End to John O'Groats Cyclists

Today is the day! 

Read more: Early Start for the Lands End to John O'Groats Cyclists

So many questions about Vismodegib

The Gorlin Syndrome Group get so many questions about the drug CVismodegib, it's benefits and side effects. 

Read more: So many questions about Vismodegib

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 Originally produced by Professor P. A. Farndon, Clinical Geneticist, Jim Costello (deceased) and Margaret Costello.  We are reliant on a team of medical advisors for the clinical content of the website. We are grateful for their continuing support. 
Gorlin Syndrome Group is Registered Charity in the UK - No 1096361 
 
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