The 3rd annual Melorheostosis Conference will go down in history as a collection of defining moments for sufferers of the disease around the world.
The St Louis University in Missouri played host to the biggest ever gathering of Melorheostosis (Melo) experts and patients; who united for the first time to take part in a hectic programme of presentations, discussions, personal consultations – and even blood donations.
The 11 experts and audience of patients – many of whom had travelled from the UK and as far afield as Australia to be part of the event – were given hope that recent genetic discoveries and developments could pave the way to a better quality of life.
The conference also lit new directional beacons for Melo researchers and scientists by revealing the outcome of patient database analysis and presenting post-operative studies which fuelled the debate as to whether surgery should or shouldn't be used to treat the condition.
And by setting time aside time for blood and DNA to be gathered from each patient – and where possible from their immediate family members, the event also kick-started the development of the first Melo tissue repository; from which detailed further analysis can be made possible.
Please contact Martine Phipps for more information or visit www.melo.eu.com