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Seeking similarities in difference: How COVID-19 has highlighted the dual importance of individual experience and unifying commonality in rare disease research

Seeking similarities in difference: How COVID-19 has highlighted the dual importance of individual experience and unifying commonality in rare disease research

This week’s blog was written by Remarez Sheehan, a 4th year medical student from the University of Oxford. Remarez entered The 2020 Student Voice Prize and was shortlisted for the brilliant essay “Seeking similarities in difference: How COVID-19 has highlighted the dual importance of individual experience and unifying commonality in rare disease research.” Read Remarez’s essay now!

Experience Huntington’s Disease Alliance’s Family Matters campaign

Experience Huntington’s Disease Alliance’s Family Matters campaign

This week’s blog was written by four Huntington’s disease charities across the UK and Ireland, who are working together to raise awareness of the impact of Huntington’s disease, not just on individuals, but on families too. The Huntington’s Disease Alliance UK and Ireland launched the Family Matters campaign at the beginning of May 2021 with the hopes of promoting an improved understanding of the unique pressures of the disease upon the families it affects. View the campaign!

Perks of a pandemic: lessons in improving the delivery of clinical rare disease research

Perks of a pandemic: lessons in improving the delivery of clinical rare disease research

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!

The benefits of working with known drugs in the search for rare disease treatments

The benefits of working with known drugs in the search for rare disease treatments

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!

Ger Renton: ‘Ethan and Me’

Ger Renton: ‘Ethan and Me’

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.