PwMS RPO BACKGROUND
The All-Russian Public Organization of Disabled People with Multiple Sclerosis (PwMS RPO) was established in 2001 (№4034 registered on 3 May 2001, General State Register Number: 1027700508791) at the First Congress of the representatives of PwMS from 48 Russian regions (representing the interests of about 70,000 disabled people with MS). Osadchikh, Anatoliy Ivanovich was elected to the office of the Chairman of the Organization; Vlasov, Jan Vladimirovich was appointed to the office of the Director General.
In total, there are 200,000 PwMS in Russia. This problem is common for about 3 million patients and members of their families. The Organization includes 47 regional branches.
The main objective of the Organization has been the advocating of the Constitutional Rights of citizens of the RF, who have multiple sclerosis (MS).
Among the most important events conducted along with the PwMS RPO, there have been:
- organization and conducting together with the RF Ministry of Healthcare, of the All-Russian Working Meeting on topical issues in medical and social rehabilitation of disabled people with MS in the RF (Samara, 2004)
- participation in the proceedings of Parliamentary Hearings at the Russian State Duma (Parliament) on the issues of disabled young people and children in the RF, in the work of the Civil Forum and the Forum of the Federation Council
- participation in the proceedings of the permanently functioning Round Table on social and economic issues in the work of the third economy sector (starting 2001)
- participation in the working session of the Multiple Sclerosis International Federation (MSIF) in April, 2005
- participation in working symposia held by the European Multiple Sclerosis Platform (EMSP) at the European Union Department for Social Development
- participation in conducting All-Russian conferences (annually starting 2001)
- conducting educational workshops for members of the Organization
- dissemination of information on MS issues (books, scientific journal and publicist articles in newspapers, web-site, carrying out public talks in regions, work with the media)
- cooperation with state authorities in the constituents of the RF to advocate the rights of people suffering from MS
- passing the law of the RF #122, which entitles PwMS to get high-priced treatment for free, in 2005
- initiating revision of the laws #122 and #178 of the RF in order to improve the quality of life of PwMS, in 2007
The PwMS RPO collaborates with centres that render assistance to relevant patients at the RF Ministry of Healthcare and Social Development, Research Institute for Neurology at the Russian Academy of Medical Sciences (RAMS), Siberian branch of RAMS, Research Institute at the Russian Academy of Sciences ‘Institute of Human Brain’, specialized rehabilitation centres in regions.
From 2003 until 2005, the PwMS RPO in cooperation with the regional bodies of executive and lawmaking authorities were developing projects for regional programmes to help disabled people with MS in the Constituents of the RF as follows: Moscow, Leningrad region, Samara region, Republic of Tatarstan, Republic of Karelia, Tomsk Region, Tumen region, Oryol region. In 36 regions, an analysis of social and political situation on MS issues was undertaken.
Since 2006, the PwMS RPO has had a representative in the Public Chamber of the RF.
In 2006, the PwMS RPO made an agreement on cooperation with the Federal Service on Surveillance in Healthcare and Social Development in the RF; the expert council included representatives of the PwMS RPO.
Since 2007, the PwMS RPO has had a representative in the Public Council at the RF Ministry of Healthcare and Social Development.