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Blog Posts

27
Feb
Rare Disease Day February 29th 2020
We are proud to support the rare disease community

The first ever Rare Disease Day was launched by EURORDIS on 29 February 2008, the rarest day of the year, only occurring once every four years. Since then, the day has been celebrated at the end of February every year. The main objective of the day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

As of 2019 over 100 countries celebrate Rare Disease Day. Events are thrown across the world by patient organisations who work on local or national levels to raise awareness for their communities.

At MRN, we’re proud of the work we have done on over 75 rare disease trials, helping get treatment to patients around the world. We aim to reduce participation burden on patients and their families and caregivers by supporting a flexible clinical trial schedule – participating from their own community.

Allowing patients to be seen in their communities makes clinical trials more accessible for those who would have to travel long distances or those living in remote locations who may not otherwise have access to potentially lifesaving treatments.

In addition to caring for our patients, we care for our local communities. We are proud to support Rare Disease Nurse Network, a new charity working to make the experiences of rare disease patients easier and help them receive a more consistent, familiar standard of care.

Their aim is to be able to provide nurses who can work in and around hospitals to provide case management – the essential navigation and signposting that rare disease patients and their families need so much. It can be exhausting for patients trying to navigate around specialist care, attending multiple hospital appointments across multiple specialities, repeating your story to each new clinician. A case manager can help patients work through that, providing the communication links so that the process is faster and easier for patients and their families – and for the clinicians too.

We are proud to be spreading awareness for Rare Disease Day 2020 and proud to continue supporting our rare disease patients and their families!

If you want to know more about our rare disease experience, let’s get in touch!

Posted by:
Laura Lange
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