Sharing experiences helps people connect and deepens understanding. Living with a rare disease can be scary, overwhelming and isolating. We empower patients and families to share their experiences with each other and with those professionals whose expertise could help improve diagnosis, treatment and care. We’re building local community and global industry networks because we believe that stakeholder interaction is a catalyst for progress.
CONNECTING & SUPPORTING
Sharing experiences helps people connect and deepens understanding. Families tell us that living with a rare disease can be scary, overwhelming and isolating.
We are building a supportive, regional community of children, young people and families affected by different rare conditions. Families share their experiences and enjoy a range of regular, accessible activities.
Many of the families support CRDN to educate others to help improve diagnosis, care and treatments. They share information about their child’s condition and their daily challenges with scientists, healthcare professionals, the pharma industry, policy-makers, the media and online platforms.
Exchanging ideas, stakeholder interaction and working collaboratively are the catalysts for making more rapid progress in developing treatments and care for those affected by rare conditions.
Companies Forum is a progressive group of industry leaders from pharma, biotech and healthcare who meet to exchange ideas and undertake collaborative projects relating to rare-diseases with patients, for patients.
Meetings are conducted under Chatham House Rules several times a year. CRDN welcome high profile speakers from industry, regulatory bodies, academia and patient groups to join these informative, relaxed and collaborative sessions with the members.
Rare Nurse (RDNN)
Creating better health
& care services
Better co-ordinated and connected health and care services will help to reduce the socio-economic stresses on families as they navigate the complexity of living with rare conditions.
CRDN conducted research which led to the establishment of a Rare Disease Nurse Network – a group of nurses specialist in rare disease, genetic counsellors, parents to children with rare diseases and rare disease patients.
Now independent of CRDN, they are helping to forge a new community across disciplines. They are connecting highly experienced professionals and people locally in person and nationally online, using their collective knowledge to overcome the common challenges of rare diseases.