EMSP Member News
EMSP is kindly inviting people living with multiple sclerosis (MS) across Europe to complete our newly launched Pan-European Patients Survey (PEP).
You can find the survey here.
This is the only such initiative that focuses primarily on the specific situation and needs of people with MS in terms of employment, care, treatment, support and living environment.
The first available version is in English, but other European languages will follow over the next weeks.
The Hungarian MS Society organised a two-day workshop with the participation of the national MS societies of five Central and Eastern European countries – the Czech Republic, Austria, Poland, Hungary and Slovakia – in association with other international organisations and speakers. The event took place on 2-4 December, in Budapest, Hungary.
The main topic referred to the challenges MS organisations have to face in the Central and Eastern European region. The working title of the program was Make your Voice Heard – How to Communicate with Impact.
EMSP was represented at the Hungarian event by External Affairs Coordinator Yves Brand. He spoke about European initiatives helping the work of local MS organisations and about opportunities for cooperation.
Over the last two months of 2014, EMSP added its voice to the efforts of its Russian MS Society (RUMSS) to persuade Moscow authorities not to close down the very important MS centre functioning within Hopsital #11, as was initially planned due to the merger with Hospital #24.
EMSP’s President and Chief Executive, Anne Winslow and Maggie Alexander respectively, addressed an official letter to the relevant authorities, drawing attention to the risks of limiting access to treatment:
“In many cases of multiple sclerosis, lack of appropriate treatment and care can lead to more rapid deterioration and increased levels of disability, which can in turn impact on people’s ability to participate in society and to remain economically independent.”
As a result of sustained lobbying, both local and international, Moscow authorities gave up the plans to close the MS centre and also promised to “improve MS services”, according to RUMSS.
by Jon Temme, MSIF Coordinating Consultant to the International Pediatric MS Study Group
Many new medications to treat multiple sclerosis (MS) are already or will soon be approved as new options in the treatment of multiple sclerosis in adults. However, MS can be observed as early as 2 years of age and becomes more frequent after the age of 10. Most of these children are now receiving medications approved for use in adults despite the fact that these medications have not been formally evaluated by clinical trials in children. Unfortunately, as in adults, close to 40% of children or adolescents have to stop treatment due to intolerance, toxicity or persisting relapses, supporting the need for new therapeutic options in children.