THE PLANNING SHOP is a supporter of Rare Disease Day 2019 which will take place on Thursday 28 February this year. To mark the occasion we will be hosting a baking competition at our UK office, and then selling the cakes to raise money for KIF1A.
KIF1A is a charitable organisation which connects families and supports research leading to treatment for people affected by the rare KIF1A Associated Neurological Disorder.
What is Rare Disease Day?
Rare Disease Day is an international event and its main objective is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
Why is it important?
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
Find out more about our Rare Disease Group at THE PLANNING SHOP.