We produce a weekly blog to share what we’ve been up to, stories from the rare disease world, interesting info on our projects, and more.
Every week we put our fingertips to keyboards to bring you, our community, stories of what we’ve been up to, things we’ve found interesting, and updates from our projects. Released every Friday, our blog is also regularly written by guests who openly share their experiences. We hope you enjoy reading our little instalments!
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!read more
The Student Voice Prize will return on the 6th October 2021! The Student Voice Prize is an annual, international essay competition that focuses on raising the profile of rare disease within the medical field, particularly with medical students, nurses and scientists who may have never come across rare diseases in their training. Learn three reasons to join this year’s Patient Group Pairing Scheme!read more
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!read more
You may have seen the Cows about Cambridge and walked their moo-vellous art trail, but what you may not have known is that our Projects Coordinator, Philippa Norman, entered a competition to win one of their mini moos and WON! Learn more now.read more
Our Marketing and Engagement Manager, Blayne, wishes our rare disease patient groups a very happy national patient advocate day from all of us at Findacure!read more
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!read more
In July 2021, we hosted a three-day online workshop that focussed on data and its uses within the rare disease community. Don’t worry if you missed it, we have summarised it for you!read more
Our Empowerment Programme grew and developed in ways we could not have foreseen at the start of Year One. It is why we want to share with you a few highlights of our journey throughout 2020-2021 thus far!read more
We came, we saw, we collaborated - We conquered! This summer has been filled with celebrations, as three of our team members have celebrated their work anniversaries. Hear from Rick, Mary Rose and Blayne on what the past year and years have meant to them! Rick on...read more
In January 2021, we hosted a three-day online workshop in collaboration with Breaking Down Barriers that focused on how patient groups can improve their engagement with ethnic minority groups to better serve their rare communities. If you weren’t able to attend, catch up on all the action with a summary and workshop recordings!read more
Haven’t had the time to read through ARDEnt’s “Making the unseen seen” report? We got you covered! Our blog gives you a summary of the report’s findings and recommendations. Check it out now and let us know what you think on social media!read more
Ok, so it might not be as good of a catch phrase as Hugh Grant’s ‘Love actually is all around,’ but hear me out because it’s true. We all know that rare diseases are individually rare, but collectively common. As it turns out, they are pretty commonly found all around us too – we just don’t always notice them straightaway. This week’s blog highlights just how common rare diseases are in everyday life!read more