Healx asked for your questions about the world of rare disease treatment development, and you delivered! View the answers to your questions now by members of the Healx team. Don’t worry if you missed the deadline for submitting questions. They are always there to help if there’s anything you want to know. Just get in touch with them via email or Twitter!
This week’s blog is written by Isabela Ribeiro, mother to three-year-old Alice who was diagnosed with Infantile Neuroaxonal Dystrophy (INAD). Isabela became a volunteer at the INADcure foundation after her daughter was diagnosed with the ultra-rare disease INAD. She has been raising awareness of this unknown rare condition ever since in Brazil and beyond. This is Isabela and Alice’s story!
You know Realise Advocacy as one of our rare disease collaborators, but now it’s time that you learnt more about the charity’s team, mission and work. Read what Lindsay and Josie have to say below and meet them at our upcoming webinar or by working with them to prepare for HTA and access!
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!
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!