View this email in your browser

Recruitment is open!

We are delighted to announce that MCDS-Therapy is now recruiting patients in the UK.

The first UK site, Newcastle Hospitals, is now recruiting patients into the study. After a year of baseline observation in the UK, recruitment will open in sites in Europe and Australia. For more information about the project's timeline, please visit our MCDS-Therapy Project webpage.


As you may be aware, MCDS is an ultra-rare disease. Please help us spread the word about our research by sharing Tweets from @MCDS_Therapy.

This bulletin also includes:
  • Find out about the role of our Clinical Trials Unit
  • Connect with organisations working in skeletal dysplasia
  • Throwback to Rare Disease Day
Thanks for reading! We hope you enjoy learning more about our progress in finding a treatment for this rare skeletal dysplasia.

What does a CTU do?

Academics and researchers are absolutely fantastic when it comes to science. But when it comes to running clinical trials and all the regulations surrounding them, they need a little bit of help moving forward. That’s where a Clinical Trials Unit, or CTU, comes in.

Find out what Newcastle University's CTU has done to get MCDS-Therapy up and running in our blog.
Check out our CTU blog

Connect with more organisations

MCDS is a rare genetic skeletal disease. There are plenty of organisations and networks around the world who patients, families and doctors can get in touch with for information and support.

We've listed organisations related to skeletal dysplasia and rare disease for each of the countries involved in MCDS-Therapy. If we've missed any, please do let us know and we will add them.
Connect with more organisations!

How did you mark Rare Disease Day?

Rare Disease Day is a fantastic celebration of the strength, unity, diversity and progress of the global rare disease community. It takes place annually on the last day of February - usually the 28th, but during leap years, it's the 29th - the rarest day of all!

Hundreds of events took place around the world to mark the day. Find out more in Rare Diseases International's review here. Why not plan your own event for Rare Disease Day 2020?!

Thank you for taking the time to read our quarterly newsletter. We hope you've enjoyed reading about the MCDS-Therapy team's latest work. If you have any suggestions for future newsletters, please let us know by contacting

With best wishes,

The MCDS-Therapy team
Copyright © 2019 MCDS-Therapy, All rights reserved.

Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list.

Email Marketing Powered by Mailchimp