Blog

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]

How to donate to Findacure – did we make your Christmas list?

by Blayne Baker | Dec 3, 2021 | Findacure team

Virgin Money Giving (VMG) is officially a ghost of Christmas past! Have no fear, though – there are still plenty of ways to donate to us this Christmas. Check out these 8 ways now!

Meet our Patient Group Engagement Committee members: Christine and Michelle!

by Guest Contributer | Nov 26, 2021 | Findacure team

This week’s blog was written by two members of our 2021-2023 Patient Group Engagement Committee! Get to know Christine Mutena and Michelle Conway now, and keep an eye out for more ‘Meet the Team’ blogs from our new committee members in the coming weeks.

Laura’s two years at Findacure have flown by!

by Laura Thompson-Harper | Nov 19, 2021 | Findacure team

Another work anniversary is upon us. This week marks Laura’s second year of working for Findacure, too! In this blog, Laura looks back on her time at Findacure and ahead at what is to come! Can you sum up your time at Findacure for us? My two years at Findacure have...

Meet our Patient Group Engagement Committee members: Chris and Craig!

by Guest Contributer | Nov 12, 2021 | Findacure team

This week’s blog was written by two members of our 2021-2023 Patient Group Engagement Committee! Get to know Chris Bedford Gay and Craig Mitchell now, and keep an eye out for more ‘Meet the Team’ blogs from our new committee members in the coming weeks.

Cheers to two years at Findacure with Philippa!

by Philippa Norman | Nov 5, 2021 | Findacure team

This week marks Philippa’s second year working for Findacure – and what a time it has been! She looks back on her time at Findacure and looks forward to what she is planning for her third year with us.

Discover the #WhoseVoice campaign!

by Blayne Baker | Oct 29, 2021 | Rare disease world

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!

Meet our new graphic design intern, Freya!

by Blayne Baker | Oct 7, 2021 | Meet the team

For this week’s blog, we want to introduce you to our new graphic design intern, Freya! Freya is jointly interning with Findacure and Costello Medical. Get to know Freya and do say hello!

3 Top Tips for Community Fundraising

by Laura Thompson-Harper | Oct 1, 2021 | Findacure team

This week’s blog was written by our Fundraising Manager, Laura! Laura shares her top three tips for community fundraising.

Healx answers your questions!

by Guest Contributer | Sep 23, 2021 | Rare disease world

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!

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

by Philippa Norman | Sep 17, 2021 | Findacure projects

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!

Isabela & Alice: Raising awareness of Infantile Neuroaxonal Dystrophy

by Guest Contributer | Sep 6, 2021 | Patient stories, Rare disease world

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!

We’ve got moos

by Blayne Baker | Sep 3, 2021 | Findacure team

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.