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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!

If you would like to share your own story on our blog, please contact Blayne, our Marketing and Engagement Manager: [email protected]

Discover the #WhoseVoice campaign!

Delve into RareQoL and Rare Community Network founder Sondra Butterworth’s #WhoseVoice campaign. Sondra shared her motivation behind launching the campaign with us, and encourages everyone to get involved. Learn what the #WhoseVoice campaign seeks to address, and film your rare disease story for Rare Disease Day on the 28th February 2022!

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Healx answers your questions!

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!

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Three reasons to join the Patient Group Pairing Scheme for The 2021 Student Voice Prize!

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!

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Isabela & Alice: Raising awareness of Infantile Neuroaxonal Dystrophy

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!

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We’ve got moos

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.

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