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Medics 4 Rare Diseases Red Flag Survey

Medics 4 Rare Diseases Red Flag Survey

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’. 

This is a piece of research that M4RD have wanted to do for many years as they have attended conferences listening to similar stories from patients and families irrespective of their specific rare disease. The final survey is the culmination of many hours of discussion and design.

The survey opens on Monday 23rd July and closes at the end of August 2018. 

Please get involved and share your views so we can all support Medics4RD in driving change within the medical profession in terms of rare disease diagnosis. It is an online survey that takes 10 minutes to complete and 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 don’t hesitate to contact info@m4rd.org.

 

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© Cambridge Rare Disease Network 2018
Website designed and built by Suzanne Morris using WordPress
Reg'd Charity Number: 1166365
Company Number: 9798317
Reg'd Office: 19 Sedley Taylor Rd, Cambridge, CB2 8PW
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Rare Disease Day 2018 – CRDN/NIHR lecture event

Rare Disease Day 2018 – CRDN/NIHR lecture event

CRDN and NIHR Cambridge Bioresource team collaborate to host a Cambridge rare disease day lecture event #ShowYourRare

Rare Disease Day takes place on the last day of February each year. The purpose is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on the lives of those affected.

Since its launch by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a substantial of media coverage. 

Following on from 2017, the theme for RDD is once again research. There has been great progress in rare disease research, often driven by effective collaborations between companies, researchers and patient advocacy groups.  Click here to find out more about the vital role patients play in the research process.

Together, CRDN and the Cambridge NIHR Bioresource team created a programme of short talks to showcase some of the ground-breaking research  being undertaken in Cambridge into a range of rare conditions.

 

The theme of rare disease day 2018 is research. The best research translates findings into meaningful health outcomes and  involves patients at all stages

#showyourrare                   #whywedoresearch

 

Snow didn’t stop play…

Despite the snow and chilly temperatures calling for a cosy evening in on the sofa, the rare disease community came out in force to celebrate Rare Disease Day 2018 at the Uni of Cambridge School of Clinical Medicine, William Harvey Lecture theatre.  Dr. Mike More, Chair of Cambridge University Hospitals, opened the evening for an exciting mix of attendees: those living with rare disease and their family members; young health professionals and students; clinicians; company and charity representatives working in related fields and the curious. Those gathered were treated to excellent presentations about current research from a wide range of speakers based on the Cambridge Biomedical campus and in the city. See the agenda opposite for info on speakers and their talks.

We used Glisser technology at the event to encourage the audience to get involved and engage with speakers by posing questions, responding to polls and sharing slides via social media. For the speaker responses to delegate questions please see here 

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© Cambridge Rare Disease Network 2018
Website designed and built by Suzanne Morris using WordPress
Reg'd Charity Number: 1166365
Company Number: 9798317
Reg'd Office: 19 Sedley Taylor Rd, Cambridge, CB2 8PW
To contact us please send an email
Our privacy & cookie policy
Rare Disease Day 2018 Addenbrookes Concourse

Rare Disease Day 2018 Addenbrookes Concourse

Rare disease day 22 Feb 2018 at Addenbrookes …

Some of the CRDN team headed to Addenbrookes to celebrate Rare Disease Day 2018 by meeting patients, visitors and staff with other rare disease advocates at the concourse.

CRDN’s Kay Parkinson and Jo Balfour took shelter from the snow to spend a busy few hours with other charities and departments from CUH chatting to patients, visitors and staff at Addenbrookes concourse in celebration of Rare Disease Day.

We’re always amazed by people’s curiosity, their personal stories and the knowledge we can share and gain from these kinds of interactions. Thanks for stopping by!

It was a great opportunity to let people know about our joint CRDN/NIHR BioResource lecture event later that evening too.  Read our next blog post to see who our guest speakers were.

Kay and Jo at Addenbrookes concourse meeting the staff and public

 

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© Cambridge Rare Disease Network 2018
Website designed and built by Suzanne Morris using WordPress
Reg'd Charity Number: 1166365
Company Number: 9798317
Reg'd Office: 19 Sedley Taylor Rd, Cambridge, CB2 8PW
To contact us please send an email
Our privacy & cookie policy