Rare Disease Day 2017

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Rare Disease Day 2017

Today is the tenth annual observance of Rare Disease Day, a day that brings awareness and highlights the importance of research and treatment of rare diseases. This year’s theme revolves around research- not only recognizing the critical role that research plays but also knowledge and awareness of the importance of this research in the rare disease community.

Imagine what it would be like to not know what is happening inside your body. Then imagine going to your doctor and finding out he/she can’t diagnose your disease. This is a reality for many rare disease patients but thankfully, research has made it possible to not only identify these, but improve understanding of these diseases. While research is important, it wouldn’t happen without the patients who participate. Their participation has brought opportunities for future research and they are a valued part of the process, from beginning to end.

“Research is key and brings hope to many people living with rare disease.”

Research for rare diseases has increased and with funding allocated specially to this research community, the hope is that it will continue to grow. There are many initiatives that support international research, which is important to ensure that clinicians and patients are connected and benefit from the pooling of resources. We have seen this international growth first-hand with rare-disease studies utilizing our patient travel services, where we are able to provide patients with travel coordination.

 

Do you need help getting started? To learn more about our Rare Disease program, download our whitepaper!

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ClinEdge Staff

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