"Дети со СМА имеют такое же право, как и другие, жить без врожденных пороков, которые наука может исправить сегодня"
Для тех, кто затронут проблемой СМА будут предоставлены новости, касающиеся деятельности ДСМА, сотрудничающих организаций, информация о новых методиках терапии, советы, ссылки на публикации. Вы будете включены в украинский реестр, из которого, в первую очередь, будет осуществляться набор в клинические испытания.
Европейская организация, объединяющая пациентов с редкими заболеваниями
- 3-й Международный День редких заболеваний
News: 1 Oct 2009 U.S. and European Rare Disease Organizations Sign Strategic Alliance
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Danbury, CT. ----- The leading advocacy groups for Americans and Europeans with rare diseases—the National Organization for Rare Disorders (NORD) and the European Organization for Rare Diseases (EURORDIS)—have signed a Memorandum of Understanding to join forces on several key strategic initiatives on behalf of rare disease patients and their families.
The intent is to increase global awareness, promote research and the development of new treatments, and provide advocacy for more compassionate public policies.
“Collaboration between our two organizations will make both stronger and more effective in representing our constituents,” said Peter L. Saltonstall, President and CEO of NORD. “Since patients with rare diseases may be located anywhere in the world, international collaboration to support and advance their needs is extremely important. This strategic partnership will help us address issues and challenges that are essentially the same on both sides of the ocean.
Danbury, CT. ----- The leading advocacy groups for Americans and Europeans with rare diseases—the National Organization for Rare Disorders (NORD) and the European Organization for Rare Diseases (EURORDIS)—have signed a Memorandum of Understanding to join forces on several key strategic initiatives on behalf of rare disease patients and their families.
The intent is to increase global awareness, promote research and the development of new treatments, and provide advocacy for more compassionate public policies.
“Collaboration between our two organizations will make both stronger and more effective in representing our constituents,” said Peter L. Saltonstall, President and CEO of NORD. “Since patients with rare diseases may be located anywhere in the world, international collaboration to support and advance their needs is extremely important. This strategic partnership will help us address issues and challenges that are essentially the same on both sides of the ocean.
