Ist Annual Russian ALS Patient Conference

February 07, 2015 / Moscow, Russia

Amyotrophic lateral sclerosis is a rare disease, and currently there is no organized systemic support for patients and their families. Furthermore, any information concerning the disease is almost unavailable for specialists and patients. Thus it is really important to organize projects aimed to create comforting and supportive environment for patients with ALS, to maintain fundraising initiative and to reveal current breakthroughs in scientific research.



Main aims

  • To discuss problems of ALS patients, to find ways to solve their problems, using the experience of foreign colleagues.
  • To share the experience of different organizations from Russia and foreign countries.
  • To unite patients’ and relatives’ organizations in a frame of Association , to attract attention of the medical society and the public to the problem of ALS.


  • Scientific Research Centre of Neurology, Russian Academy of Medical Science (SRCN) – a leading research and clinical neurology center in Russia, that has a long history of working with ALS patients. The 6th Neurological department of SRCN provides medical help to more than six hundred patients  every year. Many studies are carried out in order to find the cause and mechanisms of the disease, new approaches in treatment are being developed.

  • Miloserdie Charity Foundation on the base of Russian orthodox church – holds 24 social projects, 90% of the  work is supported by donations. Projects cover wide range of problems: Lonely elderly people, children and adults with disabilities, orphan children, homeless people, HIV-infected patients who need support and help.

  • ALS patient service – a multidisciplinary team of health care professionals (physicians, psychologists, social workers, nurses, etc.) based  in Martha-Maria medical center. More than 250 patients have been provided with professional help in recent years; more than 100 patients are under close observation now.  Patients who live in Moscow and near-by areas get regular medical help and palliative care.  Remote consultations are provided in other regions of the Russian Federation. Specialists take part in congresses and annual conferences both in Russia and worldwide. There are teaching and post diploma education programs organized in the medical center.

  • International College of Economics and Finance (ICEF) – is a unique institution, established  by the London school of economists and political science and Higher school of economy. The education of high international quality is provided by the academic staff with international qualification. The college employs 17 assistant professors, visiting professors from London and Oxford; business practitioners who give their own courses in ICEF.