Rare Disease Day is 29th February, the rarest day of the year, and we need your help to raise life-saving awareness of bone cancer!

David's story

David Ly, pictured above, was diagnosed with chordoma in his skull after a trip to the local opticians. His treatment involved two surgeries performed through the nose and sinus to reach the tumour, followed by a craniotomy and 41 sessions of proton beam therapy (PBT).

While David is two years stable, the side effects from his treatment include brain fog, endocrine deficiencies, and cognitive & memory issues.

For Rare Disease Day, we are sharing the stories behind the stats to show why patients like David deserve kinder, more effective treatments that will help them survive and thrive.

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Meet the Researcher: Adam Cribbs

Read our exclusive interview with Adam Cribbs to find out more about his innovative approach to chordoma research and how it's impacting the world of oncology.

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Get involved this Rare Disease Day...

With your support during Rare Disease Day we aim to raise more awareness than ever before! We can’t do this on our own, but we know with a community as dedicated as ours we can achieve this! Below are all the ways you can get involved:

Share your story

Patients and families are kindly sharing their personal experiences. Sharing your story can help others, raise awareness, and inspire people to support our life-saving work.

Share your story

Educate yourself

Primary bone cancers are cancers that originate in a cell found in the bone. They can develop in any bone in the body, though over a third of cases (34%) are found in the long bones of the lower body - such as the thigh (femur) or shin bone (tibia). There are several types of primary bone cancer, below are links to find out more about each form. The most common are:

There are also several less common forms of tumours, these are:

Our short video below shows real patients outlining some of the symptoms to be aware of:

Help raise awareness

Help promote awareness in your local community! Request a FREE awareness pack now and share it with friends, display it in your community hall or coffee shop, or even take it to your own GP and / or Dentist and ask them to read it. It doesn't have to be just for #RareDiseaseDay, you can help raise vital awareness any time of the year!

Request pack

If you're a healthcare professional, we have a dedicated hub where you can access FREE education resources about the signs and symptoms of primary bone cancer and tumour.

Healthcare resources

Other ways to get involved

For Rare Disease Day we will be sharing patient stories and life-saving information to help raise #BoneCancerAwareness amongst the public. Get involved on Facebook, Twitter, Instagram and LinkedIn by sharing, liking and commenting on our posts to help us reach as many people as possible!

Don't forget to show your support for our new year-long awareness campaign:

More Patients Surviving and Thriving

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