Rare is many. Rare is strong. Rare is proud
29th February 2020 marks the 13th annual Rare Disease Day. Rare Disease Day, a global movement highlighting the voices of people affected by rare diseases around the world, is a vital opportunity to raise awareness of the 1 in 20 people who live with a rare disease, like TSC.
This year’s Rare Disease Day theme is ‘Rare is Many, rare is strong, rare is proud’. We are using Rare Disease Day to champion the amazing resilience, passion and bravery of parents in the TSC community, who work tirelessly to improve the lives of their children who live with TSC.
One parent, Bobbie Tyler, who took the time to tell us about her experiences of being parent to Jennifer, her daughter who lives with TSC:
£10 Means that we can send a support pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.
£25 Can help us develop materials that are included in our support services, flagship events or campaigns.
£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.
To provide help for today and a cure for tomorrow.