National Association of Rare Disease Patients Organizations

About the Association The National Association "Genetics" was founded on February 3, 2008 by organizations that complement each other in the best possible way: the Charitable Foundation "Association "Angel" rare genetic diseases (founders are patients and their parents), which has been operating since 2004 and the Non-profit Institution "North-West Society of Patients with Rare Diseases" (founders are doctors), organized in 2005. The prototype for the creation of the Association was the European Association of Organizations of Patients with Rare Diseases EURORDIS, which has been actively and effectively working in Europe for about 10 years. Currently, similar organizations exist in all developed countries. The Association "Genetics" pursues the goal of uniting patient organizations that deal with rare diseases and rare genetic diseases throughout Russia into one common structure, to synchronize and coordinate actions aimed at improving the health and social status of patients. We adhere to the definition that a rare disease is 1: 2000 people. Rare diseases can affect any family, at any time. This is not only something terrible that happens to others. This is a very cruel reality that can happen to anyone who has a child or to themselves. A patient with a rare disease is an orphan of the health care system, often without a diagnosis, without treatment, without scientific research: and therefore - without hope. Finding methods of therapy and social support for these diseases, perhaps each of us helps our grandson or great-grandson to live a full and dignified life in the future. All over the country, parents of sick children and the patients themselves did not know where to start their dialogue with the authorities in defense of their rights, but having received support from the Association, they began to form and unite new organizations to attract the attention of doctors, government, local government and the general public to their problems. At the present stage, the main areas of activity of the Association are assistance in the creation of patient organizations throughout the Russian Federation, collection and dissemination of information on the existence of rare diseases in Russia, coverage in the media of the problems of patients and their relatives, formation of registers, work with government agencies, organization of assistance in the treatment, socialization and rehabilitation of patients with rare diseases, development of proposals for improving the legislative and regulatory framework, legal support. On the website you can familiarize yourself with the draft concept of healthcare development developed by us "Personalized medicine and treatment of rare diseases as a strategic direction for the development of healthcare until 2020". We hope that the Association will succeed in becoming the thread that will finally connect four structures: a pediatrician, a geneticist, a patient and government agencies. The Association "Genetics" will in all cases represent and protect the rights and legitimate interests of patients with rare and rare genetic diseases. Our Association will help you become stronger, gain confidence in your strengths and capabilities. We encourage you to create patient organizations in the regions of the Russian Federation and join the Association to further strengthen and increase the significance of the status of a person with a rare disease. This appeal applies not only to patients and their relatives. It is very gratifying that at the moment, the leading doctors are directly taking on the support of their patients. In some regions, they supported the Association's call to unite patients, and in some of them they even became co-founders.