24th March 2017
Mid-March is always our busiest time of year, with more meet-ups arranged around the country each year and the gathering of the clans at the European Narcolepsy Network “European Narcolepsy Day” meeting held in a different host nation each year and now in it’s 8th year.
Firstly, a huge thank you to everyone who organised and took part in events over the weekend. Like may others, I resisted all attempts by family & friends to meet other people with narcolepsy at first so I really do understand how hard this can be but would still encourage you all to do this as I’m convinced it’s the best medicine there is, whatever your age, race or gender.
This year’s theme was “Together for better care” and I think that nicely summed up the overall mood and direction of the conference. Progress on treatments and new medicines is slow but it is happening and increasingly, clinicians across Europe are looking at the wider aspects of narcolepsy such as routes to diagnosis, psychosocial aspects, socio-economic impact and the critical role that patient organisations like Narcolepsy UK play in every area.
The absolute highlight of the weekend for me was the pre-meeting, organised by Narcolepsy UK, of 12 patient organisations with Flamel Ireland Ltd to discuss sharing data on a Phase III clinical trial for an investigational study drug named FT218. Anyone interested in taking part in the trial should follow this link to find out more and complete the online form.
Being engaged at the forefront of trials is of huge importance to us all and it was very encouraging to see all of the countries attending the weekend event at the presentation on Friday night. Even more encouraging was that those who could not make it all expressed an interest in joining what we have named our “European Patient Advisory Group”. This group will meet again shortly to agree how we best work with each other as patient organisation, with clinicians, pharmaceuticals and politicians to ensure that our voice is heard.
This was the main point of my presentation to the ENN on Sunday morning as I outlined the collective experience, knowledge & desire to do good that rests in the patient groups and I keenly stressed the intellectual and financial worth of our experience to the audience.
I also had the opportunity to have a very good conversation with the founders of Bioprojet, the creators of Wakix® (Pitolisant), Jeanne-Marie Lecomte, CEO & Jean-Charles Schwartz, Scientific Director. I explained to them the delays we are experiencing in the wider prescription / availability of Wakix® across the UK and we are all keen to drive things on so watch this space!
Sadly, we still have to state that Narcolepsy is a chronic neurological condition with many likely triggers. On the issue of autoimmunity, the question “Is narcolepsy an auto-immune disorder?” was asked and the answer today is that we don’t know.
It was great to see Nicola Rule take part in a plenary session on school counselling, a role I know she has helped many people with and has huge personal commitment to. With some pooling of resources we should be able to provide more information on this soon via the website.
Before I left for Mallorca, I attended a meeting with the Chair of the Neurological Alliance and after some discussion, agreed I would like to assist in lobbying government at senior level about access to benefits across the broader spectrum of neurological conditions. I know this is an issue that affects many of us and is a demeaning and unfair process so we would also like you to help us by completing a survey from Disability Rights UK. Read more about the survey by following this link.