Post edited 7:16 am – January 30, 2012 by Jack Kelly

Dear Pauline,

Thank you for posting your message on the LGDA Forum.  We are glad that you have found our website and our Fourm, and that you have been able to provide a brief description of your status.   You have come to the right place.  We will do everything we can to try to help you.   There are a few ways we may be of help – and ways we hope that you will help us in our efforts to further understand our disease so that we can support research focused on developing treatments which will be effective in improving health conditions.  In this regard, we urge you to consider going to our website and registering.  It is a fairly simple process – here is the link to register: http://www.lgdalliance.org/pat…..on-form-2/

The information you provide is kept confidential – no personal data is ever shared without your prior approval.  This information is so very important to collect in order to help the investigators study the disease.  Your helping us establish and analyse this data helps us to help you.  If you wish information about where there are experienced health centers with fully-staffed teams which have seen, treat, and/or provide consultation reports in Gorham's disease cases, please write to us separately at support@lgdalliance.org. 

As you have told us that you are from France – we warmly welcome you to the international community of lymphangiomatosis/Gorham-Stout syndrome family.  We would like to tell you about a French-speaking support group concerned with Gorham's disease – ALEG – Asociacion De Lucha Contra La Enfermedad De Gorham.  If you go to this link you will find information to contact this very fine French Gorham's disease patient support entity.

http://www.gorhams.org/aleg/in…..8;Itemid=3

Please feel free to write to us with any questions you may wish to ask.   You are not alone.  We, and ALEG are here to help you.  If you wish to communicate with other patients, we have a patient matching program – so that my also be a reason to write to us directly at the email address above.  Again, may we remind you to register at the LGDA site provided above.

We send you our very best wishes for continued  improved health.  Happy New Year.  May you enjoy  peace, good health, and joy.

Best regards

Jack Kelly

LGDA