Research is a big part of what we are involved in. Scientific knowledge is the stepping stone to understanding and treating Myotonic Dystrophy and improving Quality of Life for all affected..
Cure DM facilitate research in many ways:
* We attend conferences, advocate for our community and ensure the myotonic dystrophy patient and caregiver is represented.
* We ensure any and all information we share is accurate and correct – and up to date!
* We are on multiple panels and collaborate to publish documents and disseminate info.
* We directly support and fund researchers and clinicians.
* We take the patients perspective to those working on studies and researching this complex condition. We remind them that we are real people, and advocate on behalf of the DM community at every opportunity.
It is vital we continue to learn about Myotonic Dystrophy, particularly congenital and early childhood onset, which is often overlooked.
CureDM Community Survey
CureDM survey for the patient community to hep us better understand those we support.
Posters are presented at worldwide conferences to raise awareness for the UK community and share real world data on how DM affects us.
Horizon Scan
CureDM keep an ear close to the ground and have developed this medication and research snapshot – a horizon scan – which can be accessed on the following page.
Conferences
CureDM are proud to attend conferences all over the world, raising the voice of the UK DM patient and sharing our expertise with the scientific community.
CureDM Focus Group
Our Charity Focus group is made up of individuals with lived-esperience, who can help shape the future of the Charity and Research, ensuring a wide range of stakeholders are involved at all stages. Click here for more details on how we can support you, or how you can get involved with the group.
CureDM funded projects
With your help, CureDM co-funds the UK DM Patient registry. We have been able to pay for clinicians and researchers to attend vital conferences, enabling them to learn more about DM and to and present their work, and have supported many projects working on DM in the UK.
Current DM Research
Cure DM is pleased to work closely with pharmaceutical companies working on DM research, bringing up-to-date information to the community, straight from the horses mouth. Everything we publish here has come direct from the company or has been double checked with them to ensure accuracy.
Palliative and End of Life
CureDM proudly collaborated with UK specialists to produce the UK Palliative and End of Life Care guidleines for the UK.