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Links
 
 

The following are groups/charities & support pages
for people with conditions like and similar to mine.




Proteus Syndrome Foundation
For those living with and/or supporting those with the AKT1 mutation
 
      
http://www.proteus-syndrome.org

Proteus Syndrome Foundation USA

·        
http://www.proteus-syndrom.de

Support group in Germany
·         http://www.emedicine.com/ped/topic1912.htm
eMedicine World Medical Library: Proteus Syndrome
 
CLOVES SYNDROME

This group was set up by Adriennne and Chris Blankenship,
the aim to search for a cure, here is the link to the foundation:
clovesfoundation.org/


There is also a Twitter page: twitter.com/ClovesFdn




CLOVES Syndrome Community:

Another group set up by Kristen Davis with an aim to
support families, educate & promote research is as follows:
www.clovessyndrome.org/



They also have a twitter page: twitter.com/CLOVESSyndrome


There is also a facebook fan page at the following link: www.facebook.com/CLOVEsSyndromeCommunity


There is also a message board at: www.inspire.com/groups/cloves-syndrome-community


Learn more about CLOVES syndrome through The Life Of Riley: www.wbur.org/series/the-life-of-riley


As well as a Facebook CLOVES Community page: www.facebook.com/WelcometoCLOVESCommunity
 




Macrocephaly-capillary malformation (M-CM):
www.m-cm.net


M-CM Twitter page:twitter.com/mcmdotnet


There are also a number of other charities that I support:

This is one that was set up in the name of my favourite actress (Simone Lahbib's) niece Eilidh Brown, who sadly lost her battle with Cancer aged 15 in 2010. The aim of the Memorial Fund is to build and maintain a respite holiday home in the Stirling area for young people and their families who are in treatment for or recovering from cancer.For more details please click the following link:
www.eilidhbrown.co.uk/
 


 
Th
is is my local RSPCA who I did some voluntary work for, please take a look at their website and at all the good work they do for homeless and rescued animals:
http://www.rspca-lancseast.org.uk/

 

 If you or anyone you know has trouble finding clothes that fit, just like myself then try this company. They have recently made me some combat trousers and they look great: www.clothingsolutions.org/


 

 In 2011 I took a trip up to Scotland and stayed at Port Selma Lodges.
These are extremely accessible for anyone with mobility problems
The hosts Willy and Jan are lovely people  who will go the extra mile
to make sure your stay is all you dreamed of and more.
Check out their website:
www.portselma.co.uk/