Thursday, February 28, 2013

28th February World Rare Disease Day

World Rare Disease Day is an annual observance held on the last day of February (February 28th or February 29th in a Leap Year) to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.

An official video has been produced which draws its inspiration from the RDD slogan for 2013, ”Rare Disorders without Borders”. It mixes 
stop motion animation with live action. Its very talented  director, Carlo S. Hintermann has produced a thought provoking, poignant video for us all to enjoy and to help continue the Rare Disease discourse.

What is a rare disease? It is a disease that is life-threatening or chronically debilitating, has a low prevalence and a high level of complexity. It usually is incurable. 80% are of genetic origin and 50% affect children.

It is timely then that this book just arrived in my library called Yellow Dress Day. It is written by Michelle Worthington and illustrated by Sophie Norsa. It tells the story of Ava who likes to wear a different colour dress for each type of weather, so on hot days she wears red, on rainy days, purple and blue for cold days. One whirly, windy morning Ava wants to go outside and play with her puppy but her yellow dress, the one for windy days, is missing. What will she and her mother do?

The author, Michelle Worthington has been friends with a family who have a little girl called Ava who has Rett Syndrome, a rare neurological disease. One day after visiting Ava and her family she went home and wrote this story for her. 5% of the royalties from the book are going to the International Rett Syndrome Foundation. An added bonus is the illustrations which are amazing when you consider that this is Sophie's first picture book and that she was still at school when she did these illustrations. She was discovered while on work-experience. Hopefully she will go on to illustrate more books.

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