Hi, I’m Farhana, Public Affairs Manager for Genetic Alliance UK and I’m going to tell you about European Reference Networks (ERNs) and why they matter.
European Reference Networks (ERNs) connect healthcare professionals and researchers across Europe. They were created by the EU to tackle rare and complex conditions.
Every year in the UK approximately 6,000 children are born with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose. Sometimes this will be because the condition is so rare it has never been seen before, but sometimes it is simply because it is so rare that the doctor ordering the tests does not know about it.
There are more than 6,000 rare conditions and no single doctor, no matter how experienced, can know about all of these conditions . A doctor in the UK might only come across a family affected by a specific rare condition only once in their career, if ever. It’s hard for doctors to know how to diagnose, treat or manage a condition which they have little or no knowledge about.
There are currently 24 ERNs and the UK is involved in 23 of them. They were set up by the EU in 2017 and involve around 20,000 healthcare professionals across 300 centres of excellence.
The UK’s withdrawal from the EU poses a risk to the UK’s ability to take part in ERNs. That’s why Genetic Alliance UK is working on a new campaign #ProtectERNs to make sure that after Brexit, patients affected by rare, genetic and undiagnosed conditions do not lose out.
ERNs allow hospitals in the UK to share health data and expertise with other doctors and specialists across Europe, providing patients with improved access to diagnosis and transformative care. It makes it possible for a healthcare professional in the UK, for example, to ask for advice from a surgeon in Germany in real-time. This means patients in the UK can benefit from expertise accross the EU without the burden of having to travel. Having access to doctors across Europe means that there is a greater chance that a doctor exists who will know about your child’s rare condition so can help diagnose it and potentially, treat it.
For too long patients and families affected by rare conditions across Europe have had to struggle to access a correct diagnosis, specialist knowledge, and appropriate treatment. ERNs offer a unique opportunity to transform diagnosis, care and treatment for patients, but only if ERNs can utilise all the specialist knowledge and health data available to them.
|ERNs the UK is involved in are:|
|ERN BOND: Rare Bone Disorders
ERN CRANIO: Rare craniofacial anomalies/ENT disorders
ERN ENDO: Rare Endocrine Conditions
EpiCARE: Rare and Complex Epilepsies
ERKNet: Rare Kidney Diseases
ERN-RND: Rare Neurological Diseases
ERNICA: Rare inherited/congenital anomalies
ERN-LUNG: Respiratory Diseases
ERN-Skin: Rare/undiagnosed skin disorders EURACAN: Rare Adult Cancers (solid tumours) EuroBloodNet: Rare Hematological Diseases
EURO-NMD: Rare Neuromuscular Diseases
ERN-EYE: Rare Eye Diseases
ERN GENTURIS: GENetic TUmour RIsk Syndromes
EUROGEN: Rare Urogenital Diseases
GUARD-HEART: Rare diseases of the HEART
ITHACA: Rare Congenital Malformations and Rare Intellectual Disability
MetabERN: Rare Hereditary Metabolic Disorders
PaedCan-ERN: Paediatric Cancer
RARE-LIVER: Rare Hepatological Diseases
RITA: Rare Immunodeficiency, Autoinflammatory and Autoimmune
TransplantChild: Transplantation in Children
VASCERN: Rare Multisystemic Vascular Diseases
You can help support the #ProtectERNs campaign by adding your name here: protect-erns.eu/showyoursupport. This will help Genetic Alliance UK to put pressure on the Government and EU to prioritise ERNs in their negotiations to leave the EU. To find out more about the impact of ERNs you can watch this short video: