links & ideas
Coronavirus (also known as COVID-19) is a new illness that can affect lungs and airways.
The current spread of the virus is affecting how we go about our daily lives and we’d like to reassure our community that the core CRDN team will be working virtually and from home to keep raising awareness and connecting people.
Below we’re sharing some links to regularly updated official information and to our new Pinterest pages providing ideas for things to do to keep yourself or your kids engaged when practising social distancing and self-isolating.
CURRENT UK NHS & GOVERNMENT INFO & GUIDANCE
Click the images below for direct links to the websites for the latest advice
You can also find accurate and current information about Coronavirus on the World Health Organization website
Join our regular multi-stakeholder Zoom meetings to explore
COVID-19 impact and opportunities for rare diseases
During the COVID-19 pandemic, CRDN is co-hosting weekly meetings with Medics4RareDiseases and Rare Revolution Magazine (via zoom) and other Rare Disease stakeholders to talk about challenges and opportunities facing all sectors of the rare disease community – patients, families, healthcare professionals, pharma and biotech industry and researchers.
In the last few weeks we’ve spoken about the following themes which have emerged:
Coronavirus has stopped children with rare genetic diseases being part of research into new treatments
“All of our labs are shut down, and as a result the precious little time my son has left is being wasted,” said one mother. “So I guess I would say the cost of this is the lives of children.” Read more…
Patient groups funding
Attrition of NHS Services
Rare disease genomic services
HCP Rare disease education
Children not accessing healthcare
Loss of rare disease workforce to virus
Disruption to clinical trials
Disruption to transplant operations
Gathering and collation and analysis of longitudinal impact data
COVID-19 could cause surge in virtual trials
The COVID-19 crisis is causing a surge in interest in ‘virtual trials’ where the bulk of the data is collected using digital technology and often from a patient’s own home, a conference heard. Read More…
Virtual clinical trials
Post COVID-19: Clinical trials will never be the same. For years, technology and software companies, as well as CROs, have been pitching the benefits of patient-centric technologies to sponsor companies. Although a small number of pharma companies have been early adopters of these technologies, others seemed to be taking a wait-and-see approach. COVID-19 has changed that. Read more…
Digital innovations tested to support vulnerable people during COVID-19 outbreak
People who may be particularly vulnerable or isolated during the coronavirus (COVID-19) outbreak, could soon benefit from a range of innovative digital solutions selected as part of the TechForce19 challenge.
Rapid adoption in telehealth
Collaboration between stakeholders
Demonstrating how powerful the RD community is at mobilising, collaborating and reciprocal support
Stream-lined drug development
Digital education opportunities for chronically ill children
We will be linking these points up to external resources shortly so please check back soon.
information specifically for the rare disease community in relation to Covid-19
Genetic Disorders UK has been working with the Clinical Genetics Society, The British Society of Genetic Medicine, and The Association of Genetic Nurses and Counsellors to produce a series of information leaflets in relation to Covid-19 specifically for the rare disease community.
Genetic Alliance UK has created a COVID-19 Hub on their website sharing condition specific information and guidance from member organisations and general information from England and the devolved nations of Scotland, Wales and Northern Ireland
current GUIDELINES, information and support
(Published June 2020)
COVID-19 Direct response from Well Child charity (help parents/carers to directly obtain PPE)
RCPCH: ‘shielding’ guidance for children & young people
(Published June 2020)
Coronavirus: The Science Explained (UKRI & Oxford Uni)
(Published 29 Apr 2020)
UK Government guidelines: What I can and can’t do
(Published 29 Mar 2020)
Shielding people defined on medical grounds as extremely vulnerable from COVID-19
Get coronavirus support as a clinically extremely vulnerable person
NHS Clinical Frailty Scale & COVID-19: who, why, what, how, where & when?
NHS: Caring for people at the highest clinical risk
(updated 11 Apr 2020)
The WHO: Advice on looking after your mental health
MIND: Advice on looking after your mental health
NHS Learning Disability
& Autism Prog – FAQ & answers
(updated 24 Apr 2020)
Need some ideas for home-based activities?
Check out these simple ideas…
Why not tell us what you are doing to beat the boredom. We’d love to hear your ideas! Share on social media and tag @camraredisease and add #BeatTheBoredom and #BeatTheVirus