Rare diseases are not so rare Berlin, 23.02.10; February 28, 2010 is the day of rare diseases! On this day, people with rare diseases on their needs, concerns and demands attention throughout the world. Follow others, such as James A. Levine, M.D., and add to your knowledge base. Live in Germany 4 million people with a rare disease; about 6,000 rare diseases are known. People with their own personal histories behind these figures. To belong to the rare is the affected children and adults, their families and face very special challenges. For example, Friedrich Leander.
A five-year-old little curly head. He suffers, like three million other children in Germany, a rare disease. Frederick parents have no real diagnosis for the suffering of her child despite years of search in countless specialists. The uncertainty and the question of the future burdened children and parents alike. For us the small Frederick says chronically ill and chronically bravely on behalf for the many Mirjam Mann, Executive Director of the Alliance for chronic rare diseases, axis e.V. explains concerned with its cares and woes The axis is a network of more than 90 patient organisations and was launched to act effectively to the outside and to support each other. The main task is to provide people with rare diseases in the public hearing and effectively to represent their interests in relation to policy and public health at European level.
The axis is composed directly for those affected. It provides doctors in finding for example, stakeholders and citizens advice supports after a diagnosis and working on the improvement of information on rare diseases. On the international day of rare diseases, the axle asking for support. The display designed specially for this day was asking for financial help to implement major initiatives for affected people. Send an SMS with the text RARELY on the speed dial of 8 11 90. With the SMS sent the owner of the Mobile 5 support on the axis e.V. In addition, an SMS costs still the normal transaction fee, but 4.83 arrive directly at the Association of the axis. Of course, you can donate with a transfer. More information at and