A section of the website dedicated to sharing useful online resources available to patients and patient groups who want to learn more about rare disease, brought to you by Vesna Aleksovska...
I am sure that you have heard about it and you are not sure what to think about ERNs. My advice would be for you to start reading about ERNs because they are happening and they will be useful for patients, doctor, researchers … and much more.
European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources.
If you were reading about reference networks now you can continue reading about the network that is important for Gaucher patients and that is the MetabERN
MetabERN is a European non-profit network established by the EU to facilitate access to the best available care and address the needs across the border of all patients affected by any rare inherited metabolic disease (IMDs) and their families. MetabERN is driven by the principle of patient-centred care for the provision of its services aiming at improving the quality of life of patients and families.
MetabERN aims to connect the most specialised centres in the area of rare IMDs to promote prevention, accelerate diagnosis and improve standards of care across Europe for patients living with IMDs.
MetabERN is entirely patient and expert-led. Through the combination of patient experience and expert knowledge from across the EU, it captures the most innovative medical advances and tailors them to patient needs.
Check out the EURORDIS Open Academy for information about patient advocacy events, e.g. Summer School and Winter School.
By providing training, EURORDIS empowers patients and ensures they have the confidence and knowledge needed to bring their expertise to discussions on health care, research and medicines development with policy makers, industry and scientists.
EURORDIS also provides the link between training alumni and organisations such as the European Medicines Agency (EMA), where trained patients actively engage in many activities including scientific advice.
Have you checked out Share4Rare patient advocacy toolkit?
See how you can benefit and empower your patient community with their useful tips and share this tool with any other patients organization you know!
Do you need help in advocating for rare diseases? Check out the EURORDIS fact sheets that can help you out when you are fighting for patients’ rights in your country.
The Policy Fact Sheets provide concise summaries of the key policy issues delineated in the European Commission's Communication on Rare Diseases: Europe's Challenges and the Council Recommendation on an action in the field of rare diseases. They are designed to serve as reference documents. Other EURORDIS documents, including Position papers, Concept papers, and Statements, are also useful for patient advocacy purposes.
The Knowledge Network on Innovation & Access to Medicines is a project of the Global Health Centre at the Geneva Graduate Insitute and the Knowledge Portal is a free public webinar series presented by leading medicines policy researchers which aim to make recent, policy-relevant research more accessible to a global public audience and facilitate flows of knowledge between the research and policy & practice communities.