‘Show-Your-Rare’ on Rare Disease Day 2019

Although a disease may be rare, patients and families share common struggles

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For most people living with a rare disease, the reality of daily life can be very challenging, says the Rare Disease 2019 organization. 

The 12th edition of Rare Disease Day On February 28, 2019, focuses on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people face every day. 

With 6,000 rare diseases, over 300 million people worldwide and 30 million in the USA are affected in various ways. 

The theme, ‘Bridging health and social care’ guides patient organizations and all Rare Disease Day participants around the world in their advocacy activities for Rare Disease Day 2019. 

According to the first ever Europe-wide survey on juggling care and daily life with a rare disease, 8 in 10 patients have difficulties completing basic daily tasks. 

In support of Rare Disease Day 2019, the National Institutes of Health (NIH) is hosting an event to raise awareness about these disorders, the people they affect, and current research collaborations. 

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The NIH hosts a website that lists rare diseases that include the main name for each condition, as well as alternate names, such as: 

Inclusion on this list does not serve as official recognition by the NIH that the disease is rare. Some conditions that are not considered rare are on this list and are labeled accordingly. 

Sponsored by the National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center, the event will feature interactive panel discussions on collective research models for rare diseases, patient registries, rare cancer research initiatives, and no disease/patient left behind. 

New this year will be a presentation of the first-ever Zebbie award for the NCATS Rare Diseases Are Not Rare! Challenge. 

Participants in this event can share their thoughts, photos, and experiences during the day via social media using the hashtag #RDDNIH. 

For more information visit Rare Disease Day at NIH 2019.