Select Page
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.

 

Would you like to read more RAREnews...

Previous news posts

Next news post

© 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
Patient Centred Focus at Genomics Festival 30-31 Jan 2018 – Front Line Genomics

Patient Centred Focus at Genomics Festival 30-31 Jan 2018 – Front Line Genomics

In January 2018 CRDN visited the 2-day GenomicsFest at ExCel in London hosted by Front Line Genomics.

We heard inspiring talks and made great connections for the future. It was exciting to see Rare Disease charities and individuals taking to the stage to share the importance of genomics in diagnosis and personalised treatment and to give the science a human side.

The Transforming Genetic Medicine Initiative have written a great blog about the patient centred focus of the festival.  Check out the link to see how rare disease charities, individuals and advocates had their say. Many thanks TGMI for allowing us to share your blog and for ensuring patients and their advocates are at the heart of the conversation.

Image from Front Line Genomics website

Would you like to read more RAREnews...

Previous news posts

Next news post

© 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
DNA Digest – reflecting on the CRDN Summit 2017

DNA Digest – reflecting on the CRDN Summit 2017

Rare diseases are rare but rare disease patients are numerous. DNA Digest said “One of the most impressive parts of the program was patients presenting their posters.

Each person was suggested to share three wishes with the audience, regarding the future care of people with their conditions. Becoming more visible, recognised and connected was a unanimous wish of the patients”.

Click to read the whole article. 

© 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
Ring20 Research and Support UK share their take home messages and collaborations from #CRDN2017 Summit

Ring20 Research and Support UK share their take home messages and collaborations from #CRDN2017 Summit

Allison Watson of Ring20 Research and Support Uk attended #CRDN2017 summit with her Patient Journey Poster

The patient journey poster competition

“A great innovation of the conference and real highlight for us was the patient journey poster competition. Prior to the conference, we were 1 of 33 different patient groups who took the time to produce posters to summarise their rare condition and their own patient journey. I (Allison) have never produced a poster before and have no background in Graphic Design, but with some guidance from the lovely CRDN team I gave it a go, because I felt the importance was in getting the word out about r(20) syndrome, how it affects us and what we want, not the quality of my artwork!”

Read Allison’s full review of our 2017 Annual Summit on the Ring20 Research and Support UK website.

 

Ring20 Patient journey poster competition entry
© 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
Findacure reflections on CRDN2017 summit. Re-imagining the Patient Journey.

Findacure reflections on CRDN2017 summit. Re-imagining the Patient Journey.

On 23rd October the rare disease community gathered in Cambridge for the Cambridge Rare Disease Network’s third annual summit. This day-long conference is always a great opportunity for Findacure to meet up with the rare disease community on our own doorstep, and we were thrilled to be invited to speak on the day. Rather than give a blow by blow account of the day, Findacure’s CEO, Rick decided that his blog for the week would highlight some of its major themes.

All conferences are different. They have a different focus, target a different audience, and deliver a very different atmosphere. In a month filled with conferences, including Rick speaking at Bio2Business, an orphan drugs and rare diseases conference in London, and Katie attending EyeforPharma, it is the conferences focusing on rare diseases that have been particularly special. In addition to our own Newcastle Rare Disease Showcase event (more about that soon), the Findacure team had the pleasure of attending the CRDN summit.  After a great day, I thought that I’d share my thoughts on what the CRDN summit stands for.

 

C is for collaboration

Collaboration really was at the heart of the CRDN summit. The team had worked hard to select a programme of talks that showcased projects in the rare diseases that involved many different disciplines. The specialist orphan drug pharmaceutical company Sobi spoke about their work with patient groups, both to help develop new treatments, and to improve the way that drugs are delivered to ease their day-to-day lives.

The Mendelian team highlighted the work there online platform is doing to provide an effective digital diagnostic tool which is accessible and helpful to primary care professionals. Importantly this tool is responsive and relies on the input of clinicians around the world to improve its results.

Finally Kay Parkinson, CEO of Cambridge Rare Disease Network, gave an excellent talk about her personal experience as a mother of two children with Alström syndrome. When exhibiting a poster about the condition at an international conference, she made contact with a pharmaceutical company who had a product that had the potential to act as a treatment for this condition. From this serendipitous meeting, a research project and clinical trial for this ultra-rare condition has snowballed.

R  is for “Read all about it”

A great innovation of the conference, and real highlight for me, was the patient journey poster competition (a project born from Kay’s own poster experience). Prior to the conference, 33 different patient groups took the time to produce posters to summarise their rare condition and their own patient journey. These posters were shared with all delegates in printed form so that everyone, whether clinician, researcher, life sciences worker, or rare disease patient, could read all about the impact of a multitude of rare diseases.

Even more excitingly five poster authors were selected to give a five-minute lightning talk during the conference, telling the audience a little about their condition and their three wishes for the future. The CRDN team asked Findacure to chair this session, and Mary Rose and I brought our dreaded bell along to help ensure that all of the speakers kept to time. It was a real pleasure to be involved in this session, and the talks were of an exceptional quality. 

D is for diversity

The whole day was hugely diverse, with a number of different sessions helping to bring different interest groups into the rare disease fold. The team

from Students4RareDiseases were involved in a session with medics, students, and genetic counsellors focussing on the role early career healthcare professionals can play in rare diseases. There was also a session focussing on the role of technology in rare diseases, with the team from No Isolation showcasing a robot avatar, which is designed to help children who are unable to attend their school due to ill health remain engaged in the classroom. These two breakout sessions combined with the CRDN Companies Forum and patient journeys posters, really ensured that everyone had a place at the event.

N is for new hope

The whole event was a great showcase for rare diseases, and we are grateful to the CRDN team for giving Findacure such an exciting role in the day. Between the talks on drug repurposing, gene editing, and the impatient patient revolution, I left the day with the sense that there is lots to look forward to for rare disease patients in the near future.

© 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
AKU Society on rare disease nursing

AKU Society on rare disease nursing

Nurse Specialists provide expert advice related to specific conditions, providing specialist advice and psychological support for both the patient and family.  

Patients consistently rate their Nurse Specialist as higher than other health professionals in terms of both their honesty and of understanding their needs.

Read more at the AKU Society blog.

© 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