Medics4RareDiseases are excited to announce the launch of their new research project: The M4RD Red Flags Survey. The purpose of the survey is to find out what different rare diseases have in common during the time before diagnosis, a period often called ‘the diagnostic odyssey’. It is common knowledge that, often, receiving an accurate diagnosis is one of the biggest hurdles that a patient with a rare disease will face in their life. M4RD hope the results of this research will enable to us to produce an educational tool for clinicians that will help them recognise when a patient has a rare disease. They have called this tool “The Red Flags of Rare Disease”.
M4RD are asking all rare disease patient groups to please designate an individual to complete the survey. This is a wonderful opportunity for individual patient groups to come together and produce something that will help the entire rare disease community. Also please pass this on to as many patient groups as you can.
The survey opens on Monday 23rd July. M4RD will be taking over the social media platforms of Rare Revolution Magazine on their Tuesday Takeover on 24th July. The survey then closes at the end of August 2018. It is an online survey that takes 10 minutes to complete. It can be accessed via this link: http://bit.ly/M4RDredflags. If you need to access the survey in any other format or have any issues please don’t hesitate to contact [email protected]. Find out more about Medics4RareDiseases at ww.m4rd.org and sign up to the mailing list to get all our latest news including updates on the survey.