This week’s blog was written by Geraldine Renton, author of Ethan and Me. Ger’s firstborn son, Ethan, had a very rare genetic condition called MPS II Hunter Syndrome and sadly passed away in September 2020. She chronicled her adventures with Ethan on her award-winning blog, ‘It’s me and Ethan’, until she decided to approach Tribes Press to memorialise their story in book form. Ger was kind enough to write a guest blog for us to share her time with Ethan.
This week’s blog was written by Erin Paterson who discusses her experiences of living with Huntington’s Disease (HD) and trying to start a family. Read her guest blog now and let us know what you think on social media!
This week’s blog was written by Sonia Sankoli. Sonia is the Communications Officer at Soft UK, and her son, Dhian, was diagnosed with Trisomy 13. In his honour, we are sharing their story to mark Trisomy Awareness Month this March.
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!