To whom it may concern, We are aware that in Europe there is a wide variation between countries in vaccine prioritization for SARS-CoV-2 in fragile individuals. Patients affected by Primary Ciliary Dyskinesia (PCD) are eligible to be vaccinated in some countries and not in others. PCD is a rare, genetic, severe multi-organ disease, characterized by impaired [...]

The Q-Life app is developed by the CF Center of the UMC Utrecht, in collaboration with the Dutch Cystic Fibrosis Foundation (NCFS) and Solviteers. On this app, patients can define for themselves which factors or criteria are important for their quality of life, rank them in order of importance, and rate these factors over time. [...]

Pulmonary arterial hypertension (PAH) is a rare and chronic, rapidly progressing disorder characterized by the obstructive remodeling of small pulmonary arteries resulting in elevated pulmonary vascular resistance and blood pressure in the pulmonary circulation. PAH results in significant strain on the heart, often leading to limited physical activity, heart failure, and reduced life expectancy. The [...]

A new paper titled European Reference Networks: challenges and opportunities has been published in the Journal of Community Genetics. Birute Tumiene, BoMS member for Latvia and clinical geneticist, and 8 ERN coordinators wrote this paper outlining some of the challenges faced by ERNs and presents possible solutions and opportunities. Abstract: European Reference Networks (ERNs) were founded on [...]

The European Respiratory society (ERS) has recently launched a new online resource, the ERS Respiratory Channel:  www.ersnet.org/ers-respiratory-channel/ The channel will bring together all the digital content of ERS and the European Lung Foundation (ELF) in one place, offering access to live events, podcasts, interviews, panel discussions and digital learning resources. The content on the channel [...]

True to the motto “Not the patient, the expertise should travel” the European Reference Network for Rare Lung Diseases (ERN-LUNG) starts a Population Registry. More than 7,000 different rare diseases are known throughout Europe. Some of these affect a few thousand people, or only a few patients. The problem with this is: too little known about the [...]

The clinical trial network for Primary Ciliary Dyskinesia (PCD-CTN) was founded in 2020 under the framework of ERN-LUNG with the aims to improve clinical and translational research and facilitate development of new treatments in the field of PCD. This disease-specific CTN initially consists of 18 clinical trial sites in 12 countries in Europe and the [...]

The “Recommendations to achieve a mature ERN system by 2030” have been developed by EURORDIS, their member organisations and ERN ePAG patient advocates. EURORDIS has played a critical role in amplifying the patient voice and creating the conditions for engagement within ERNs so that their activities remain driven by patients’ needs. Their vision is for a [...]

The European Pulmonary Hypertension Association (PHA Europe) publishes the Mariposa Journal 2-3 times per year to keep you up to date on their activities and any developments relating to Pulmonary Hypertension. The latest 2020 winter edition gives you an insight into last year's activities both on EU and local levels. You can learn more about our [...]

This year marks the tenth anniversary of the entry into force of the Directive 2011/24 on patient rights on cross-border healthcare. Under this Directive, EU nationals have the right to seek planned healthcare in another EU country. They can also claim reimbursement for treatment from their national health system or health insurance provider. This piece of [...]