|We would like to thank all our sponsors and donors for their generous support of M4RD’s 2021 work programme that includes further development of Rare Disease 101 and gathering data on medics’ attitudes towards rare diseases (and much more!).|
Thank you also to Takeda for a donation towards M4RD 2021.
Breaking down the stigma of rare diseases in healthcare is vital to improve the diagnostic pathway. Good care co-ordination requires an empowered medical workforce. Asking doctors to #DareToThinkRare is fundamental to improving the experience of all patients with rare diseases and eliminating the diagnostic odyssey.
By supporting M4RD, companies are enabling M4RD to do vital work that will benefit all people living with rare conditions. Thank you!
Find out more about how we work with sponsors.
Please note: M4RD works completely independently from its funders and none of these companies has any editorial control over activities.
M4RD 2021 work programme
Despite the unexpected events of 2020, M4RD managed to achieve its goals for the year. The team continued to build on the success by launching Rare Disease 101 in February. M4RD’s annual symposium co-hosted with the Royal Society of Medicine took place online, attracting its biggest ever audience.
Working collaboratively with Rare Revolution and CRDN, M4RD helped form Action for Rare Diseases Empowerment. ARDEnt brought together over 30 different stakeholders from across different sectors to look into the risks and benefits posed by the pandemic to rare disease. The report was published in May followed by ARDEnt’s inaugural webinar which attracted over 140 participants. There is plenty more work to do as we work on the recommendations made from our findings.
In 2018, M4RD conducted its Red Flags Survey to find out what different rare diseases have in common during the time before diagnosis: a period often called ‘the diagnostic odyssey’. We wrote an article about our work so far on this project and are hoping to publish our full findings in a medical journal later this year.
Other goals for 2021
- Further collaborative work will take place with NSAMR and the University of Birmingham on the UKRISE2020 project in which we will survey medical professionals about their attitude towards rare disease.
- Work with the Rare 2030 project on addressing the issue of medical education.
- Continue to develop the M4RD website into an educational hub.
- Work with Findacure on the 2021 Student Voice Prize essay competition.