The European Commission is looking at health 'missions' it can target over the coming years. Our colleagues at the European Brain Council have been hugely active in advocating for a Brain Mission, which will include RLS. You can read this proposal here: braincouncil.eu/wp-content/...
A recent European Commission proposal failed to mention the brain or the impact of brain disorders on European society. As RLS is a brain disorder, we and our European RLS groups found this very disappointing.
However we still have a chance to influence this. We need to bring this oversight to the attention of the responsible people, both the scientific and patient communities involved in brain research. We need to ensure they do not ignore RLS.
So...
We are going to send emails, hopefully hundreds, if not thousands of emails, to draw attention to their oversight. We need your help. This is of great importance for the funding of brain research, and thus RLS research, in the coming four years.
We are asking you, as individuals, to send a copy of email below (adapting where appropriate) to Ms Annette Weber (annette.weber@bmbwf.gv.at).
Annette Weber is the spokesperson for Mr Heinz Faßmann, the Austrian Federal Minister for Education, Science and Research who will chair the forthcoming Competitiveness Council.
We need you to do this today. Just copy and paste the text below into an email, add your name and send it to Ms Annette Weber (annette.weber@bmbwf.gv.at). We cannot allow RLS or brain disorders to be ignored!
If you send an email, please could you indicate so below, so we have an idea of whether our campaign is working?
Thank you!
______________________________
Dear Mr. Faßmann,
I am writing to you today as I would like to draw your attention to an issue that is extremely urgent and relevant for patients diagnosed with brain disorders such as Parkinson’s disease, Multiple Sclerosis, Schizophrenia, Alzheimer’s disease, Dystonia, Restless Legs Syndrome, Epilepsy, Dementia and many more.
As a European citizen living with Restless Legs Syndrome, I am closely following developments that concern research funding. As such, I am aware that EU decision-makers are currently discussing the design of the next Framework Programme, entitled Horizon Europe, that will support research across the EU. Furthermore, I also learned that Horizon Europe will fund various R&I Missions that aim to address a number of pressing societal challenges.
To my dismay, I recently learned that the European Commission circulated proposed ideas on potential Missions, as a starting point for their development, amongst the national Science Ministries prior to the informal meeting of EU Research Ministers that was held on 15th October. When reading these, I could not find any further mentioning of the brain or the impact of brain disorders on European society.
I am profoundly disappointed and even shocked that the suggested examples of Missions do not address brain diseases since we, as patients, are well aware of the immense burden and human suffering caused by brain disorders. What is more, mental and neurological conditions could severely affect the sustainability of healthcare systems in Europe. One in three European citizens are likely to be affected by a brain disorder, the cost of which is estimated at €800 billion annually. It is therefore paramount that the EU Ministers that will meet on 29th-30th November take robust measures to effectively address this threat.
Against the above, I strongly urge you to make a call for adopting a Brain Mission and taking the well-being of our society into account during the upcoming negotiations on Horizon Europe. This would make a real difference to EU citizens and will provide me and other patients living with mental or neurological diseases with hope for cures and improved treatments.
With kind regards,
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Please send personal stories (to be used anonymously) in ~ less than 300 words about the desperation you have suffered with your RLS…
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