“Join us in making voice of rare diseases heard” motto of the Rare Diseases Day, 29th February 2016

Piotr Podolec

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Abstract


Just a few days ago, on 29th February we celebrated for the nine time the Rare Diseases Day. This year the main theme was “Patient Voice” as it is high time to recognize the crucial role of patients, their families and care‑giv‑ ers in the whole process of delivering better care. We all believe that the Patient’s Voice is stronger when receiv‑ ing appropriate training, is vital because rare diseases patients are experts in their disease, and is increasingly present and respected in the medicines regulatory pro‑ cess, during which patients bring real‑life perspective to the discussion. Since 2008 in hundreds of cities all over the world, thousands of events dedicated to rare diseases are taking place. Krakow with its two cen‑ ters for diseases – one in the University Hospital and the other our Centre for Rare Cardiovascular Diseases in John Paull II Hospital are bright spots on the polish map. This hear, we have joined our efforts and together organized the 3rd Conference on Rare Diseases and ad‑ dressed numerous important topics. However, there ae still many, more to be resolved in the hopefully bright future.

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DOI: http://dx.doi.org/10.20418%2Fjrcd.vol2no6.241

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Journal of Rare Cardiovascular Diseases (JRCD)
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