This week’s blog was written by Rosaline de Koning, a 4th year medical student from Oxford University. Rosaline entered The 2020 Student Voice Prize and was shortlisted for her brilliant essay “Perks of a pandemic: lessons in improving the delivery of clinical rare disease research.” Read her essay now and be sure to enter The 2021 Student Voice Prize when it returns this Autumn!
This week’s blog was written by our 2020-2021 Corporate Partner, Healx! This is the first of their six-part blog series, which will explore the power of drug repurposing in rare disease from a wide variety of perspectives.
Healx is hosting a “Kickstart Drug Repurposing: Finding Treatments for your Rare Disease through Drug Redevelopment” workshop at our virtual Drug Repurposing for Rare Diseases 2021 Conference. Get to know their team and claim your free ticket now to join us on the 15th – 16th June!
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.