Projects

Rare disease telemedicine home nursing service

For over a year now Cambridge Consulting Network, a body of University of Cambridge students, have been helping us gather information and evidence to assess the need, viability and cost/time saving implications of a  Rare Disease home nursing service.

Their preliminary report was presented at an event in March 2016, followed by a discussion with Dr Larissa Kerecuk and her rare nursing team from Birmingham Childrens’ Hospital and Helena Baker, Vice President of Nursing from the Medical Research Network.

Read more about the rare nursing debate 

They are now gathering all of their findings to write an academic paper and we’re hoping to reach as many patients and their families and carers for their views.  Could you spare 5 mins to complete their questionnaire?

https://goo.gl/forms/KJtroyiBscxNqwpO2

The bigger the voice we have the greater chance we have to make this support service a reality.


A bit more about the project

The aim of this project is to evaluate how telemedicine could increase the efficiency of rare disease nurse-patient interactions and support rare disease patients and carers to access medical support in their own homes.

This survey has been set-up to establish the feasibility, acceptance and patient/carer view in regards to telemedicine. Natalie Rebeyev, who has been leading the CCN team most recently, comments that

“By and large, we have seen that caring for patients with rare diseases is a great concern for their caregivers and loved ones. Not only is there a dire need for a rare disease nursing service, there is also strong evidence for a telemedicine pilot programme to help ease the burden of care. Many patients travel long distances to reach a care centre which often takes lots of time and money. A project of this nature will not only bring about millions of pounds in cost savings, but will, most importantly, empower patients to take control of remotely managing their conditions and decrease the number of annual hospital visits. The recurring theme is that patients need a remote network of specialists who can assist them through the use of a telemedicine platform.”

“Thus far, the survey revealed that the majority of patients are receptive to a telemedicine pilot and over 90% of patients are willing to learn how to use video call applications. Over 50% of respondents believe that telemedicine will help save them time and money.”

This article gives an interesting insight into how we might ‘re-imagine the patient journey’ through technology


Unique Feet dance group

We have formed a dance group for children with rare diseases from the Cambridge area. Choreographers from professional contemporary dance group Collective Arts Movement are helping the children to express themselves in whatever way they feel comfortable and able.

Their inaugural performance was at the Sobi charity ball in April 2016, and we hope to find more opportunities for these little superstars to shine!

We o12472775_10153354357251721_7305711771894355513_nften think of rare diseases in medical terms  and its easy to lose sight of the children and families at the heart of our work.

So, for the recent charity ball hosted by Sobi, the CRDN formed a contemporary dance group – ‘Unique Feet’ – featuring children with rare diseases.

The kids rehearsed together weekly for several months, and over that time a lovely sense of community has emerged. We hope to continue this… stay tuned!

All proceeds from the ball supported CRDN, the Haemophilia Society and Rare Diseases UK, and of course Sobi is a specialist pharmaceutical company focusing on rare diseases, so the whole night was a brilliant celebration of the rare disease community.

We received a beautiful letter of thanks from the group which we share here.


I write this email on behalf of the children from Unique Feet and the parents.

Firstly we just wanted to write and express a big thank you to all at CRDN for allowing Jo and Ekida to develop the concept of Unique Feet and for the support and investment you have given to the project.

As you will be aware Unique Feet’s moto is “Life may not be the party we hoped for, but while we’re here w10346272_1791449494410552_718613786951938106_ne should dance” and that’s what the children were able to do on Friday with your support. As you appreciate it can be very difficult and frustrating at times raising a child with rare diseases/syndromes, purely because health care professionals are not always aware of the condition or how best to treat them, therefore its refreshing to know organisations like yourselves are working closely with key companies to improve the lives and experiences of patients with rare diseases. The SOBI event not only gave us an opportunity to raise awareness of our own child’s conditions but more importantly remind all the people who attended the event, that behind each rare disease/syndrome is a very special and unique child/individual.

Although Unique Feet is still a very new concept its been valuable for both the children and us as parents. The children have formed a very special friendship, but more importantly were welcomed in a friendly, safe and compassionate environment where they could truly be themselves. We wrote as our contribution for the national rare disease day “all c12729308_10153240591046721_3100894873607424797_nhildren need is a little help, a little hope and people who believe in them and beautiful things can happen” Unique feet has definitely provided this and hopefully was demonstrated within their performance . For us as parents its been great to network, discuss issues with people who truly understand the daily challenges we all face, but again helped form new friendships as sometimes isolation can occur. We are all hoping this is just the beginning of this special group.

We have all thanked Jo, Ekida and Emily personally, but we would be grateful if you could again pass on our sincere gratitude to them all for their patience, enthusiasm, time, but more importantly coming up with

the idea of this project, no words can truly describe what it’s really has meant to us all, to be part of this group. I suppose we should let the actual performance do the talking! We saw four very special children who face daily challenges come alight on stage with confidence and grace.