First, the name. We call it a Family Day as it is “family friendly” and children are welcome; it is open to everyone.
We normally start the day with two, or three, formal presentations by medical experts, both from the UK and abroad, or occasionally sufferers. We have had speakers from the USA, Italy and Spain. If time allows we hold a panel discussion where all the doctors can be questioned about issues affecting all CVS sufferers.
After a break for lunch, we hold a short annual general meeting of the charity. We then hold one-to-one sessions between the doctors and the attendees. We offer 10 or 15 minute personal consultations with each of the speakers and a sufferer or their family. Access to world experts on CVS on such a personal basis is a rare opportunity.
The less obvious side of the day is the chance to meet and chat with other sufferers. For many CVS sufferers they feel isolated, not knowing anyone else with the condition. Meeting others and sharing experiences can be a really important aspect of attending.
We offer a free ‘children’s facility’ (creche) with activities and CRB checked helpers to supervise. If a child is ill or upset, they can be brought into the main room to find the parent or carer, even during the “formal” presentations – family first.
When are they?
We normally hold the meetings on a Saturday during early-mid November.
Where are they held?
In the education centre of Birmingham Children’s Hospital. This is as central a location as possible for people to travel to, and has good facilities available.
How much does it cost?
The meeting and creche are entirely free. We do pay for the facilities and often for travel costs of speakers, so we do appreciate any donations to help offset the cost.
An excerpt from Dr Abu-Arafeh’s presentation (2013)
An excerpt from Prof. Andrews’ presentation
Part of Professor Andrews’ presentation discussed the drug discovery process, including the huge costs and long lead times that are involved in the process. Further information can be read here on the Medicines and Healthcare Products Regulatory Agency (MHRA) website, an agency of the UK government’s Department of Health.
An excerpt from Dr Tormo’s presentation (2013)
A poster presentation of a small study of Diamine Oxidase (DAO) and CVS is available to download here.