This article first appeared in The Information Point newsletter Our World in 2016. This was the ninth Rare Disease Day and it took place on the rarest of days, 29 February 2016.
The Rare Disease Day 2016 theme was ‘Patient Voice’ and recognised the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers.
Patients and patient advocates use their voice to bring about change that ensures that politicians continuously and increasingly acknowledge rare diseases as a public health policy priority at both national and international levels; increases and improves rare disease research and orphan drug development; achieves equal access to quality treatment and care at local, national and European levels, as well as earlier and better diagnosis of rare diseases; supports the development and implementation of national plans and policies for rare diseases and helps to reduce isolation sometimes felt by people living with a rare disease and their families.
This year the US charity Where There’s a Will There’s a Cure once again held their Blue for the Cure Facebook event to mark Rare Disease Day and raise awareness of centronuclear and myotubular myopathy by asking people to wear the colour blue and post a photo on Facebook. Melanie Whiston told The Information Point: ‘Each year it is overwhelming to see how many people support the CNM-MTM community. We want to thank everyone for showing the families and community that we are not alone in this journey’.
Neil who works as a volunteer at his local Multiple Sclerosis centre in the UK went to work in blue and his colleague Amanda wore blue to support him. Twins Lilly and Cooper, aged six from Ohio wore blue for Cooper who has x-linked myotubular myopathy (Lilly wore some pink too) and Jackie, also from Ohio wore blue to raise awareness of centronuclear myopathy, the condition with which she is diagnosed.
Rebekah from Oklahoma wore blue for sons Lane and Christian. Sharon wore blue to support her grandson Kmoney, while Marie from New York went for a run in blue with her husband across the Bronx river. Lori and her family from New Jersey wore blue to support Beau who has MTM, as did many of their friends and family. Anne and Mel from the Myotubular Trust in the UK also wore blue.