Rare Disease Day

Today is the 28th February and a very special day…today is Rare Disease Day!

Rare Disease Day is help on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

Did you know that 300 million people around the world have rare disease covering over 6000 diseases? So rare is not so rare after all?

For 2018 this year’s theme is ‘Rare needs Research’ Research is crucial for improved care, treatment and potential cures. This day is also to raise awareness with policy makers and medical professionals to show how rare diseases impact patient’s lives.

So today I am joining in with the #ShowYourRare campaign and I have produced a video on YouTube, which you can take a look at below, that talks about today and what it is like living with my rare illness Pure Autonomic Failure.

Remember we may be rare but we have ROAR!


Rachel Jury

My name is Rachel Jury and I have a rare illness called Pure Autonomic Failure. My bladder and bowel have failed so I permanently have an ileostomy and a urostomy. I also blog over at http://rocking2stomas.co.uk/ about my journey and what it is like living with 2 stomas and how to make the most out of every day!

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