In honour of Rare Disease Day 2021, we wanted to highlight the wonderful patient stories that have been shared with us throughout the year. Read one or read them all. This is all of our story and it’s been a privilege sharing your journeys on our blog. Happy Rare Disease Day! We’ll never stop fighting for you and the rare community.
This week’s blog was written by Martha Harlam, founder of Ataxia Awareness – Information – Hope. Ataxia has defined most of her life since she was first diagnosed in 1988 at 38 years old. This is her story!
The power of collaboration: How one patient group partnered with medical researchers to find a treatment for a rare cancer
This week’s blog was written by Jo Williamson, Chairman of The Phaeo And Para Cancer Charity! His story highlights the power of collaboration between individuals, patient groups and medical professionals when looking to create a new innovative treatment for a rare condition. Read his story!
If you haven’t had a chance to read the new UK Rare Disease Framework in full, we’ve summarised its contents for you in a simple, easy-to-read blog. Learn what the UK Rare Disease Framework means for you and let us know your thoughts in the comments or by tagging us on social media!
Youth Mental Health Awareness Day took place on the 7th September 2020, and in support, the Findacure team launched the #RareMinds: Youth Campaign. This campaign looked to highlight some unheard voices in our rare disease community with a focus on teens and young adults. These were their stories!