ОБЩЕРОССИЙСКАЯ ОБЩЕСТВЕННАЯ ОРГАНИЗАЦИЯ ИНВАЛИДОВ-БОЛЬНЫХ РАССЕЯННЫМ СКЛЕРОЗОМ

Patient organizations to improve help to communities

Patient voluntary organizations’ role in improving the quality of rendering social and medical assistance to communities.

Yan V. Vlasov – MD, Mikhail Al. Kurapov, Mikhail V. Churakov – PhD 

 

Yan V. Vlasov – MD, Mikhail Al. Kurapov, Mikhail V. Churakov – PhD. Patient voluntary organizations’ role in improving the quality of rendering social and medical assistance to communities.

Organized patient communities (spearheads, voluntary organizations) can be very important in rendering assistance to people with various diseases.  In this context, the experience of the All-Russian Public Organization of Disabled People with Multiple Sclerosis (or, All-Russian MS Society – ARMSS) is exemplary. Multiple Sclerosis is a severe chronic disabling disease, from which over 150,000 patients suffer in Russia. This article has endeavored to analyze the performance of the ARMSS over the past ten years and described the major trends of its activities, working methods and achievements. ARMSS’ successful practices have been emphasized: co-organization of patients, activating and combining efforts and resources of social partners to support people with MS, encouraging the social rehabilitation and adaptation of patients, participation in making and implementing the state policy to protect people with MS.

Keywords: voluntary patient organizations, rehabilitation, rehabilitation techniques, multiple sclerosis, protection of the rights of patients, the All-Russian MS Society (ARMSS), Public Council to protect rights of patients.

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MAY 28: ALL-RUSSIAN PATIENTS CONGRESS

Dear Friends,

As many of you know, at the end of 2009 our Organization along with the League for protecting patients, the Haemophilia Society and other active Russian patient organizations established the All-Russian Patients Union.

Soon, on May 28, the Union will hold its most important event, i.e. the Fist All-Russian Patients Congress. The activities done and decisions made at the Congress affect your and our interests directly. Nobody knows what course the state policy will take in terms of supporting patients with diseases requiring expensive drugs after the ‘Seven Nosologies’ pragramme, that currently works, ends in 2011. While the time is opportune, we need speak our minds. Our future depends on it.

Remember, but for the timely campaign the All-Russian MS Society conducted to protect patients’ rights, we should not have the drugs provided as they are. There is no knowing what might have happened to us.

Therefore, we call on you to join the congress and say what you think is important.
The Congress will be held on May 28, 2010 at the Central Entrepreneurs House (‘Tsentralny Dom Predprinimatelei’) at the address: Moscow, Pokrovka ul., 47/24, bldg 1; from 9am to 5pm All participants will be served with a lunch.

Who are close to the venue, please, do come. Those with ethernet connection available are invited to ‘vote for’ the Patients’ Rights Declaration being developed by the Congress at: http://www.patients.ru . All interested parties and individuals including patients, family members, friends, may vote.We look forward to you taking part in our common affairs.

 

Olga Bobrovnikova,
musician and public leader

RPO-PwMS resources

PARTNERS

The All-Russian Public Organization of Disabled People with Multiple Sclerosis (RPO-PwMS) expresses the deep gratitude to the Joint-stock Company “Company ER-Telecom” (Samara) for granting the place for web-resources of the RPO-PwMS, and for their technical support and comprehensive aid.
  

Special thanks to Andrey Ivanov.

Thanks to Aleksey Babichev, the Marketing Manager, for granting the additional disk space for all the RPO-PwMS resources.
Thanks to Aleksey Rybinskiy, the Chief Administrator of servers of the Joint-stock Company “Company ER-Telecom”.
Joint-stock Company “Company ER-Telecom” 443041, Samara, Krasnoarmeyskaya street, 72.
Information Centre tel.: (846) 202-03-00
E-mail: Этот адрес электронной почты защищён от спам-ботов. У вас должен быть включен JavaScript для просмотра.
Website: http://ertelecom.ru/
 
The All-Russian Public Organization of Disabled People with Multiple Sclerosis expresses the deep gratitude to employees of the Open Company “IBResource” for their free-of-charge aid with the prolongation of the license of the All-Russian Forum of People with Multiple Sclerosis.

Special thanks to Anna Gavrikova, the Chief Manager of the Open Company “IBResource”.

E-mail: Этот адрес электронной почты защищён от спам-ботов. У вас должен быть включен JavaScript для просмотра.
Tel.: +7 (816) 268-09-21
Website: http://www.ibresource.ru/   
 


We express the sincere gratitude to the Company INO “RNIC” – the Independent Noncommercial Organization “Regional Network Information Centre”, and to the Association RELARN for including into the program “RU-CENTER - to the future” and for giving organizational and technical opportunities for the creation, the support and the development of the electronic resources of the RPO-PwMS.
 Website: http://www.relarn.ru
Website: http://www.nic.ru
 
 We express our sincere gratitude to Sergey Dyomchenko, the Director of the company RITLabs, for granting the license software of The Bat! Professional Edition, that is so necessary for us for the realization of our activity. We wish you much success and prosperity!
Website: http://www.ritlabs.com/ru/

Olga Bobrovnikova: musician, writer and public figure

***

“A pianist of the Romantic School”, ”Diva of Pianoforte” – that is how international media has spoken about this fascinating young woman. Since she was a child, Olga dreams about music and to be onstage. She gets a good music education while training at the Gnesiny Seven-Year School through to the Gnesiny Music Pedagogical  Institute, where she manages to form a piano duet, then she takes part in many ensembles. While still a student, Olga gets acquainted with professor Raikov and starts a joint search in the area of music therapy. On graduating from the Institute, Olga gives concerts on tours, where she performs in a duet together with her husband (violinist Mikhail Bezverkhniy) and also as a solo player; she records chamber music works by Schubert, Mozart, Tartini, she also participates in international festivals and competitions. Starting 2003, she performs benefit concerts to support the fight with multiple sclerosis, in 2006 Olga established the MU-SIC Foundation and travelled around the world with the mission “Music and musicians against MS”. She gives a series of master classes in Russia and overseas, writes a book about Conservatoire professor Pavel Avgustovich Pabst (1854-1897), who was a friend of Tchaikovsky, Taneyev, Rubinstein. The other day, the “Diary of Alexandra Petrovna Pabst” book is to be released by the “Sport i Kultura” publisher in Moscow. All that is being done despite the diagnosis of multiple sclerosis, the first signs of which showed up to Olga over twenty years ago.

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Performance of PwMS RPO in 2006-07: ‘How is steel tempered?’

(a letter to friends)

The alterations the Russian society has undergone within the last 20 years have appeared a heavy burden on the shoulders of ordinary people. It was especially difficult for people stricken by Multiple Sclerosis (MS). First, they would not be able to get authentic information about adequate treatment for MS, then, they would not be able to get necessary medicines because of their soaring prices and the difficulties of time required for the healthcare to re-organize.

For some 15 years, voluntary organizations of people with MS (PwMS) in Russia have been working incessantly and actively to advocate the Constitutional right of persons with MS to live. Since then, the number of regional MS societies has grown from 4 to 48, and the total number of members in MS organizations from 76 reached 35,572 people. In 2001, the PwMS RPO was established that has housed all these organizations. The main goal of the PwMS RPO is to create auspicious legal environment for regional MS societies to work effectively. The mission is to advocate Constitutional rights of persons with MS in Russia.

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