AIMS
1 Our primary aim is to network families by giving children , parents and adults the opportunity to speak with or meet someone else in the same boat as them . The sharing of experiences , ideas and concerns we believe can really help families deal with this often difficult and rare condition .
We would like to achieve this by
-Working with Oz Dallyn who runs the closed FACEBOOK group called LM(UK) . PLEASE MESSAGE THIS GROUP TO JOIN IT AND JOIN THE FORUM OF PATIENTS AND PARENTS SHARING QUESTIONS , EXPERIENCE AND WORRIES . THIS IS NOW THE MAIN COMMUNICATION PLATFORM FOR LM IN THE UK
2 Medical Information . We aim to provide a basic summary of the condition and what treatment options exist . We are NOT doctors though and will obviously not be even attempting medical advice .
3 We are also at the end of the phone to answer questions (where we can),listen to your concerns and offer support and guidance to anyone who needs it . Our eldest daughter Emily has a cystic hygroma of which 90% was removed in 2004 . We know we were lucky with Emily’s outcome and that was the result of the fantastic medical team that we found through the support group . Hopefully by continuing and growing the support group we can help others affected by a lymphatic malformation .
We would like to achieve this by
-Working with Oz Dallyn who runs the closed FACEBOOK group called LM(UK) . PLEASE MESSAGE THIS GROUP TO JOIN IT AND JOIN THE FORUM OF PATIENTS AND PARENTS SHARING QUESTIONS , EXPERIENCE AND WORRIES . THIS IS NOW THE MAIN COMMUNICATION PLATFORM FOR LM IN THE UK
2 Medical Information . We aim to provide a basic summary of the condition and what treatment options exist . We are NOT doctors though and will obviously not be even attempting medical advice .
3 We are also at the end of the phone to answer questions (where we can),listen to your concerns and offer support and guidance to anyone who needs it . Our eldest daughter Emily has a cystic hygroma of which 90% was removed in 2004 . We know we were lucky with Emily’s outcome and that was the result of the fantastic medical team that we found through the support group . Hopefully by continuing and growing the support group we can help others affected by a lymphatic malformation .