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30 April 2009 On 27 April in the Federal Service on Surveillance in Healthcare and Social Development (Roszdravnadzor), Nikolai Yurgel, the Federal Service Head, chaired the meeting on providing people with rare diseases with essential pharmaceuticals, including the programme of the seven nosologies requiring heavy spending. Some 30 non-for-profit organizations and agencies took part in the meeting: The All-Russian Haemophilia Society, the All-Russian Association of Disabled People with Diabetes, the Moscow Diabetes Association, the Rheumatology Association “Nadezhda” (“Hope”), the Non-for-profit Partnership “Equal Right for Life”, the Anti-Cancer Movement, the Association of organizations of people with rare diseases ”Genetics” (S.-Pete), the Epilepsy Society (S.-Pete), the Society of patients with oncohematologic diseases, the Hunter Syndrome Society, the Organization of people with nephrological diseases “Right for Life”, the Organization for assistance to children with rheumatologic disabilities “Vozrozhdenie” (Renaissance), the Organization of nephrological patients “NEPHRO-LIGA”, the Organization for assistance to people with oncologic and oncohematologic diseases “Sodeystvie” (Assistance), the Organization for assistance to people with mucoviscidosis, the [All-Russian] Multiple Sclerosis Society, the Organization “Assistance to people with childhood disability who suffer from Gaucher's disease and their families”, the Tula Organization of disabled people “Diabetes”, the Foundation for science, education and medicine development, etc. They discussed issues on interaction within the state in terms of the Roszdravnadzor and civil society represented by patient organizations. Nearly all representatives of the non-for-profit agencies noted positive developments in pharmaceutical provision for relevant patients and praised the Roszdravnadzor’s operation on organization of interaction and problem solving in non-for-profit organizations on the whole and each particular patient. The meeting heard various views on how to provide services in health, care, rehabilitation and social support. The representatives of non-for-profits told about their challenges and put forward requests and propositions. In conclusion, Nikolai Yurgel mentioned that the Roszdravnadzor deems it extremely important what non-for-profits and, especially, patient agencies think in question, and their opinion is surely respected when making management decisions. He openly hopes for the ongoing and productive collaboration, which exists today between non-for-profit organizations and the Roszdravnadzor, and that it will be developing and getting stronger in the future. The Roszdravnadzor head believes that an effective control and provision system of health services must be developed with non-for-profit organizations actively involved on both federal and regional levels. The directors of Roszdravnadzor territorial departments received relevant instructions to encourage interaction activities. rznrf.ru
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