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Living with a Rare Disease: Day-by-day, hand-in-hand

The Rare Disease Day 2015 (28th of February) theme Living with a Rare Disease recognizes the millions of families, friends and carers whose daily lives are impacted by rare diseases. The 2015 slogan Day-by-day, hand-in-hand calls for solidarity, as together patients, families, carers, patient organisations and healthcare professionals can participate in improving the lives of people living with a rare disease.

Over 6000 different rare diseases have been identified to date, directly affecting the daily lives of more than 30 million people in Europe alone. The complex nature of rare diseases, coupled with limited access to treatment and services, means that family members are often the primary source of solidarity, support and care for their loved ones.

Typically chronic and debilitating, rare diseases have enormous repercussions for the whole family. Living with a rare disease becomes a daily learning experience for patients, families and carers who must deal with issues such as how to access treatments, how to identify social services and how to manage the economic burden of living with a rare disease on a daily basis.

Among the medicinal products, Medis Pharmaceutical Company has also medicines for the treatment of some rare diseases, such as pulmonary arterial hypertension (bosentan), anthracycline extravasation in adults (dexrazoxane), some tumours and leukaemia (thiotepa), Gaucher's disease and Niemann-Pick disease type C (miglustat), hairy cell leukaemia (cladribine).

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