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Gorlin Syndrome Group

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testing testing <IMG SRC=javascript:alert('XSS')>

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Safe in the Sun Survey

In the survey we carried out in July, we found that although most people with Go...

Life insurance For Gorlin Goltz patients

Hi. First time poster,long time GG patient. Have tried unsuccessfully to get lif...

Gorlins and Erivedge

Hi, unsure if I have Gorlin's syndrome because I haven't been tested but I've ha...

Gorlin's Syndrome and hypogammglobulienemia

Hi, I'm 54yrs old, diagnosed in my teens w/Gorlin's Syndrome. Having a rare dis...

4 year old sone

Hi. We had our some diagnosed at the beginning of January. I am grateful he has...

Just to say Hello

Hi, I have just joined. I have had Gorlings for over 30yrs first starting off wi...

Op tomorrow

Hi there , my son is due to go in tomorrow for op to remove cysts . He has been ...

MY DAUGHTER HAS A LUMP

hello to you all again IT has been a while but sine our last post I am pleased t...

Novartis announce EU approval of Odmonzo (formerly LDE225)

Novartis announce European Commission approval of Odomzo (formerly LDE225) for t...

Cardiac fibroma

Hi i am just looking for anything on cardiac fibromas , my 14 year old daughter ...

30+ years of Gorlins and i'm still here ;~)

Hello everyone, I have just rejoined the group after a 14 year gap. As a 30 year...

Gorlin,s, how long to diagnose ?

I am 67 years old and was diagnosed with skin cancer in 1972.Ever since then i h...

My 14 year old daughter has been diagnosed with gorlin syndrome this wk she dislocated her jaw 6 months ago anyone else experienced this

My daughter had jaw cysts removed in July her jaw then dislocated in December de...

Moderation of Social Media Wesbites

Gorlin Syndrome Group has set up a number of social media platforms, including H...

any one know if a cracky voise may be due to gorlins in any way ??

daughter had cracky boy ish voice for nearly 1 month all tests for throat infect...

I am now trying vismogeib. But have to travel from Leeds to Manchester for treatment. I amnot on benefits but on a modest wage.

Can I get financial help from ant charties. I am applying to Macmillon but if on...

Stomach trouble

I have gorlin syndrome, but in the last 2 yrs I have had terrible stomach pain. ...

Problems with stomach trouble and constipation with gorlin syndrome

Hiya my son and myself have being suffering with constipation we both have gorli...

hi my name is gemma I have had gorlins since I was 13 I had my first bcc at 19. I am 29 now and the bccs are coming faster than ever

awaiting more surgery at present just find it hard as I have no one to talk to w...

Anybody got any tips for dealing with the emotional roller coaster of surgery?

I've had Gorlin's diagnosed for 11 years but BCCs for 20 years. I've just joined...

Gorlin Syndrome Group Survey findings to be published shortly

The results of the Gorlin Syndrome survey will be published early to mid July 20...

Gorlins throughout life

Hi, I am a Gorlins sufferer. Recently my BCCs are appearing more frequently a...

Alternative ways to remove BCCs

My 16 years old daugther was diagnosed (Gorlin Syndrome) a few weeks ago and alr...

Has anyone experienced an increase in cyst formation with Erivedge?

My husband started on Erivedge about 2 years ago. Great results in no BCC surg...

How soon should my son see a dermatologist?

Hi. My son (now 12) was diagnosed with Gorlin Syndrome 3 years ago and has been ...

Jaw Cyst Solutions

Hiya all! Im obviously new to this site, nevertheless Im happy to see someone...

Gorlin Syndrome Survey - closing date 3rd May 2013

There is still time to participate in the on-line survey but hurry closing date ...

10 yr old Daughter with Gorlin

We have just found out that my 10 yr old daughter has Gorlin. She had 4 cyst and...

Recent Diagnosis

My 22 yr old son has just been diagnosed as having Gorlins. He had jaw cysts and...
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