Max Appeal Edinburgh Meeting
This is the first 22qdel meeting to be held in Scotland and it has been enthusiastically received by families and professionals alike. Max Appeal is very keen to work with the medical professionals to see a specialist clinic established in Scotland and families will have the opportunity to talk about this. We are very grateful to Orla Duncan, Cleft Lip and Palate Clinical Nurse Specialist in Edinburgh, for her support for this meeting. The meeting will also provide the first opportunity for people to see and discuss the Max Appeal consensus document for the diagnosis and management of 22q11.2 deletion with the NHS, which a dedicated team has been working on for over 2 years.
The day will begin at 10.00am with talks by Dr Felicity Mehendale, Consultant Cleft and Plastic Surgeon and Dr David Fitzpatrick Clinical Paediatric Geneticist, all from the Royal Hospital for Sick Children Edinburgh, with opportunities to ask questions.
After lunch there will be an outline of Consensus Document for 22q by Dr Andy Gennery, Reader in Paediatric Immunology at Great North Children’s Hospital, RVI and a key member of the Steering Group of the 22q Consensus Document followed by a discussion on setting up a multi disciplinary clinic for the treatment and ongoing care of those affected by 22q in Scotland.
Finally, after tea, there will be a parent discussion session to draw out current issues, problems, and things working well, for those families affected by 22q facilitated by Cecilia Yardley Communications Manager, Children's Heart Federation with a final round up on how Max Appeal can help you and plans for the future and people will say goodbye to each other at about 4.30pm.
Please note:
There are no childcare facilities being provided.
We ask for a contribution of £25 per person, which is less than half of the cost being met by Max Appeal.