Rare Disease Day 2019

Every year, on the last day of February, people from across the world celebrate Rare Disease Day.

Rare Disease UK, is a national campaign that aims support to members of our local communities who are afflicted with any form of rare disease. I am one of those people and feel strongly about continuing to raise awareness of rare diseases and invisible illness.

On this special day, we unite and tell our stories. We publicly spread awareness and capture our communities attention, through our personal experiences living with a rare disease. We continue to raise this awareness in the hope that we can spark a positive and lasting change in how these disease are viewed.

This lasting change will enable those like me with rare diseases (and their families), to endure a better quality of life. This will be achieved through educating the public and a wider range of care services. In turn, this will entitle vulnerable patients to a better quality of care than they currently receive. This poor quality care is purely down to health practitioners being unaware of or uneducated on many rare diseases. Meaning the majority of us complex patients are more likely to be treated adequately in the future, be that in the short or long term.

This change is referred to as the UK Strategy for Rare Diseases. The campaign is run by Genetic Alliance UK, who represent at least 190 patient focused organisations for those affected by genetic diseases in the UK.

For more information on the campaign or to make a donation, please check out Rare Disease UK. Thank you.

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Ella Hollis

Trying to find normality amongst multiple chronic illnesses.

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