Участие Фонда в акциях Международного Дня редких Заболеваний

В 2015 году Фонд стал номинантом международной награды Пациентская организация года

 

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Информация на Европейском сайте
8-й Международный День редких заболеваний

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Press release. 25, February 2015. CSMA, Ukraine. We are pleased to announce that Foundation Children with Spinal muscular Atrophy (CSMA) has just awarded the EURORDIS Patients Organization Award 2015 at the EURORDIS Black Pearl Gala Dinner on February 25 on the occasion of Rare Disease Day 2015. The award recognizes innovative methods in patient support and advocacy for rare diseases. CSMA is extremely excited to be a partner of Rare Disease Day and is proud to be honoured by EURORDIS with high level Award – the Award from community of rare patients which have estimated its work. More than ten years has been gone by this significant moment when CSMA work has received such appreciation at the international level. Working together, we are starting to make a real difference to patients and families from Ukraine throughout Europe living with a rare disease. CSMA was honoured based on the outstanding commitments on behalf of patients, on the Foundation's policy and on its collaboration with patient organizations. The full speech of gratitude 
EURORDIS (Rare Diseases Europe) is a leading International Non-Governmental Organization (INGO) and is recognized as the largest European Patient Organization in the field of rare diseases. EURORDIS represents more than 600 rare disease organizations in 84 different countries, covering more than 8,000 distinct rare diseases. EURORDIS is the voice of an estimated 30 million patients affected by rare diseases throughout Europe. About Rare Disease Day Rare Disease Day started in Europe in 2008. It was launched by EURORDIS. This year, it is observed in more than 80 countries, with a national sponsor in each country. NGO “Rare Disease in Ukraine” is the sponsor in Ukraine and has purpose to focus attention on the needs of patients and families affected by rare diseases. By having one voice, many of these very small groups are finally heard at the state level. Each year, a global planning team selects a theme for Rare Disease Day. The theme for 2015 is “Day-by-day, Hand-in-hand” More than 600 patient organizations, government entities, research institutions, and companies developing treatments have signed up as Rare Disease Day Partners on the website hosted by EURORDIS. About CSMA The Foundation “Children with Spinal Muscular Atrophy” – is the unique organization which has incurred difficult mission of consolidation of rare POs’ as well as advance of rare diseases question in Ukraine. Efforts and successes of the organization conduct to recognition RDs at the state level following the European principles of development of the legislation, the help to patients with RDs. Almost 10 years the tough job on communications between legislators, doctors, researchers and patients is conducted. Despite a high level of Foundation’s motivation in rare NMDs, recognition that all RDs problem must be solved in complex at the state level, and out of the ordinary contribution to the promotion of the rare disease cause by example of rare neuro-muscular disease (SMA) since it was established in 2004. It provides advocacy, education, research and patient services on behalf of rare disease patients, families. More information is available at www.csma.org.ua For information please contact Vitaliy Matyushenko Email: info@csma.org.ua Office: +380-57-731-3121 Mobile: +380-50-364-0673

 

    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.