EMSP Member News
On 20 February, the Polish MS Society (PTSR) met with representatives of the Polish Ministry of Health in a bid to convince the health authorities to solve the problem of multiple sclerosis patients losing their entitlement to state-funded treatment with disease-modifying drugs (DMDs). The meeting produced a temporary solution involving the pharmaceutical industry, with PTSR vowing to keep this matter on the public agenda as “it concerns real people and their health, not so-called diseases qualifications”.
On 18 February, the Romanian MS Society (SSMR) joined, in Bucharest, by representatives of the Neurological Society of Romania (SNR) and of the Romanian Doctors College (CMR) organised a roundtable debate on accesibility of treatment for multiple sclerosis.
The state spends an average of 10,000 euros per year for every MS patient, which is 20 times the gross medium monthly wage in Romania. However, a top health professional present at the discussion admitted that the total costs of MS treatment are significantly higher, putting a tremendous financial burden on those affected and their families. In Western European countries, the same costs are belived to average up to 40,000 euros per year or even higher.
2013 EMSP Membership Satisfaction Survey: Positive feedback, increased support requested for national level initiatives
The EMSP Membership Satisfaction Survey 2013 collected data from 13 different member organisations regarding various parameters, such as their interaction with EMSP and their participation in EMSP’s projects and events.
The main purpose of this evaluation survey was to have feedback from our associations on their satisfaction level with EMSP’s work and initiatives and to take up any suggestions for future actions.
The Greek MS Society organised the annual meeting titled “BmyLife – Improve the quality of your life”, on 16 October, in the city of Thessaloniki.
EMSP was represented by President John Golding and Chief Executive Maggie Alexander.
The Romanian MS society (SSMR) organised, on 27-29 September, in the city of Cluj-Napoca, the National Multiple Sclerosis Seminar. This event was attended by 140 stakeholders: MS patients, their carers, neurologists, MS nurses, psychologists and local authorities.
The city’s mayor, ex-PM Emil Boc, expressed his admiration for the work of SSMR and pledged his support for the development of a centre where people living with MS would get information and counselling – the Smile Centre.
- Parliamentary event in Poland: “The faces of MS”
- Lithuanian MS Union is one of the partners engaged in carrying an innovative and relevant project in Lithuania
- Donate 1 € for research in MS: “A click can change many lives”
- Emphasis on Youth at World MS Day event in Warsaw
- Press Release: There is no correlation between CCSVI and MS