Общероссийская общественная организация инвалидов-больных рассеянным склерозом

Dear Friends,

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.

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 e-mail защищен от спам-ботов. Чтобы увидеть его, у Вас должен быть включен Java-Script

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 e-mail защищен от спам-ботов. Чтобы увидеть его, у Вас должен быть включен Java-Script

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/

***

“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.

**
  The PwMS RPO remains a stable independent and self-financing structure. In 2008 alone, the Society has won two big grants of the Public Chamber of the Russian Federation:

1. IT-Technologies as Means to Rehabilitate Disabled People, and

2. Enhancing Accessibility of Rehabilitation Services for the Disabled.

Good governance as well as experienced and efficient staff at the Society play the key role in implementing the projects successfully.

**
  The activities of the Institution of Plenipotentiary Public Expert, which the Society established in order to, among other things, develop the register of Russian people with MS, made it possible not only to nearly double the number of those to receive high-priced treatment, but also to contribute most actively to continuation of financing of the National Project Health'. This will guarantee the provision of people with MS with medicines in future, taking into account all those who need them.

**
  Advocating rights of people with MS on the federal level meets support of vigorous activities of Society's regional branches that work in, for instance, governmental public commissions. PwMS RPO representatives in the city of Samara in collaboration with other all-Russian organizations of disabled people and local governments resolve issues of improving the quality of life of unprotected communities including people with MS in the coming years.

**
  Pursuing social integration of people with MS, the PwMS RPO holds recreational events. Members of the Society get together and conduct fancy-dress balls, competitions, quizzes, music events, outings, and, interestingly, sportive competitions. At functions like these, people with MS not only demonstrate their talents and creative potential, which is so beneficial for their self-esteem, but also make friends and just find each other.

**
  Members of the Society find each other and get married! In understanding how important and essential it is for anybody to have his or her own family, the Society is proud indeed to be such a significant social link in people's relations. This, as well as other things, gives all reasons to claim that an MS person's life must and does go on.

**
  The activities of the Institute of Plenipotentiary Public Expert, which the Society established in order to, among other things, develop the register of Russian people with MS, made it possible not only to nearly double the number of those to receive high-priced treatment, but also to contribute most actively to continuation of financing of the National Project 'Health'. This will guarantee the provision of people with MS with medicines in future, taking into account all those who need them.

**
  The PwMS RPO assists and supports the establishment of specialized neurological centres. Some of the centres have shown themselves to good advantage, which contributed to the influx of people with MS from remote regions. People with MS receive not only medical help and after-care, but also skills to effectively manage disease symptoms in everyday life.
  For instance, hippotherapy is increasingly successfully used in MS. Members of the Society benefit a lot from its therapeutic effectiveness that oftentimes goes beyond all expectations.

JUST FACTS
- The PwMS RPO has established 28 MS consulting offices. 14 new branches joined the PwMS RPO. The Organization trained 72 Plenipotentiary Public Experts on PR-technologies, non-profit activities, legal basics to advocate patients rights.
- The PwMS RPO conducted 5 expert training schools for the Districts of Siberia, Urals, Moscow and S.-Petersburg (in all, there are 7 Federal Districts in Russia). This activity is to cover other Districts (for instance, the Southern Federal District).
- 80 neurologists have got further education in dealing with PwMS in training schools the PwMS RPO conducted (2008-2009).
- The PwMS RPO participated in 16 sessions of the Duma (Parliament Lower Chamber) and in 3 sessions of the Federation Council (Parliament Upper Chamber).
- The PwMS RPO is constantly in cooperation with the Ministry of Health and Social Development; the PwMS RPO is in the office of the Ministry Council.
- The PwMS RPO and the RosZdravNadzor (the Federal Service on Surveillance in Healthcare and Social Development) have a joint council to provide quality assistance to PwMS.
- The PwMS RPO participated in 2 sessions of the Government and in 1 session of the President.
- The PwMS RPO conducted 3 all-Russian actions, in which 1,500-9,000 people took part:
  1) sociological poll on the quality of life of PwMS;
  2) sociological poll on fulfillment of the state programme of PwMS provision;
  3) signing in support for the draft law submitted to the Duma in March, 2009. (The law name is 'About pharmaceutical support for people with severe chronic diseases'. The draft law suggests introducing legal regulation for relations that emerge in providing pharmaceuticals for people with chronic diseases such as heritable deficit of blood clotting factors; Willebrand disease, cystic fibrosis (mucoviscidosis), hypopituitarism (pituitary nanism), other disorders of lipids accumulation (Gaucher's disease), malignant reoplasms of lymphoid, of blood-forming and related tissues (myeloleukemia and hemoblastoses), multiple sclerosis, as well as conditions after organ/tissue transplantations.)
- The PwMS RPO conducted 8 Round Tables with media (in Moscow, S.-Petersburg, Samara, Ulyanovsk, Khabarovsk) on 12 TV-channels, 3 of which are federal ones (i.e. transmitted throughout Russia). The PwMS RPO gave interviews to the BBC Russian Service, Radio Europe Plus, Radio Megapolis, Radio Silver Rain' (Serebryany Dozhd).
- The PwMS RPO published both scientific papers and scientific recommendations for MS professionals.
- 5 press-conferences were conducted together with Deputies of the State Duma, Federation Council, Public Chamber of the RF, Public Council of the President of the RF Administration in order to forbid stopping the federal financing for the MS programme. (2007)
- The PwMS RPO made the first ever in Russia frame contract with the Federal Service on Surveillance in Healthcare and Social Development in the RF (RosZdravNadzor) about joint activities on+ (2007)
- The PwMS RPO established the Institute of Plenipotentiary Public Expert at the Federal Service on Surveillance in Healthcare and Social Development in the RF. (2008)
- The PwMS RPO co-works in the development and implementation of regional lists of PwMS entitled to get high-priced pharmaceutical support at the expense of the federal budget in 54 regions of the RF. (2008)
- The PwMS RPO entered the European Multiple Sclerosis Platform (EMSP) at the European Union Department for Social Development in May, 2008.
- With the participation of the PwMS RPO, the RF Government and State Duma appropriated money for the treatment of people with chronic disabling diseases (Programme of 7 Nosologies) to the amount of 33 billion rubles (|730 million) annually over 2008-2010. For 2009, the allocated sum was augmented to be 37 billion rubles (|818 million). (2008)
- The PwMS RPO is engaged in establishing the MS nurse service. The office of MS nurses will include management of PwMS. MS nurses are part-time employees. Today, 77 MS nurses work in the Russian Federation. (since 2008)
- The PwMS RPO carries out the programme of support for pharmaceutical manufacturers. (2009)
- The PwMS RPO contributed to the increase of provision of PwMS with DMDs by 20% (i.e. by 7.2 billion rubles) in 2009.
- The Organization's web site is developing. Its resources are constantly replenished; its forum welcomes PC-users and it has a page for readers in English.
- There are hotlines for patients today. Using these, patients can telephone and leave a complaint in a relevant Moscow agency about unsatisfactory services.
- The Organization has engaged in setting up a hospice service and advocating healthy lifestyle.
- The PwMS RPO started cooperation with the manufacturer of popular brand mineral water.