Rare Disease Connect in Neurology (RDCN) is an annual meeting that includes both healthcare professionals and patients. I was very honoured to be invited and sponsored by UCB to attend the 5th RDCN in Barcelona on behalf of the MAA and the MG patient community in Australia.
Over 3 busy days, I engaged and spoke with MG patient organisations as well as healthcare professionals from all over the world. Fellow patients and I discussed common challenges and shared insights and ideas for how we can best support the MG community in our countries – we all agree to not reinvent the wheel when we don’t need to!
Sessions for the patient organisations included updates and opportunities with MG guidelines, tackling referral challenges, the increasing role of nurses in MG care, advancing patient-centric clinical research, and the Rethinking MG project. As it was our first time attending, I gave a presentation on the MAA – who we are, what we do, and what we have achieved.
We also joined some presentations with the healthcare professionals for topics including the digital doctor and artificial intelligence (AI), late and very late onset MG, social determinants of health in MG care, and multidisciplinary teams in action.
While it was a whirlwind trip and the jet lag and physical tiredness were challenging, I was so glad to be there. The MAA will make the most of this experience, sharing the knowledge gained and fostering the connections and collaboration with fellow patient organisations.
A big thank you to UCB for this opportunity to learn and to continue building our global network.
Natalie Windle (MAA Secretary and MGNSW President)