Rare Disease Day and Blue for the Cure 2017

Rare Disease Day 2017 took place on 28 February 23017 – the theme was research and the slogan for the day was ‘With research, possibilities are limitless’.

Research into rare diseases is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care. Below you can view the official Rare Disease Day 2017 film.

The US charity Where There’s a Will There’s a Cure once again held their Blue for the Cure event to raise awareness of centronuclear and myotubular myopathy by asking people to wear the colour blue and post a photo on Facebook. Photos were once again shared by those affected by centronuclear and myotubular myopathy, their family and friends around the world.

Amy’s son Andy is diagnosed with myotubular myopathy and she shared a photo of herself and her husband Matt on a beach on Mexico where they were celebrating their 25th wedding anniversary, Kathleen posted a photo for her son Logan who is diagnosed with myotubular myopathy and Pernilla shared a photo saying “I did it in memory of my darling Ragnar and his siblings that never got to be”.

Anne and Mel from the Myotubular Trust wore blue at the Find a Cure drug repurposing event they attended in London that day. It was a day for charities in the rare disease space in the UK to learn more about the possibilities from drug repurposing. Anne says “This was a very timely event for the Blue for the Cure day and we were proud to wear blue for Will-Cure”.

Kate, takes part in Blue for the Cure every year and this year, along with her husband Robert and mum Sandy wore blue for her nephew William, The Wood family attended a tropical blue themed “Moana’ party and sang songs from the movie that day and Sharon and her grandson Kmoney dressed in blue too – Sharon says “I love my grandson to the moon and back. Always praying for the cure”. Matheus and his cousins in Brazil wore blue too.

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