ERN ReCONNET
Events & Media
Past and future meetings, conferences, congresses.
News
News from relevant stakeholders on health and rare diseases. Take a look at it and start to engage with the initiatives enlisted here.
If you have a news that you would like us to share, please send us an email to:
ern.reconnet(at)ao-pisa.toscana.it
ERN ReCONNET Stories
Are you a patient living with a rare or low-prevalence connective tissue disease? Tell your story! Among other initiatives, the ERN ReCONNET is working on the development of organisational patient’s pathway models for rare connective tissue diseases (rCTDs) covered by the Network. The organisational patient’s pathway models will be developed following the RarERN Path methodology, developed by the…...
New ERN ReCONNET Strategic Board
The new ERN ReCONNET Strategic Board We are pleased to announce the composition of the new ERN ReCONNET Strategic Board. We extend our warmest congratulations to the new members of the Board for their commitment and look forward to their contributions in guiding the network towards continued excellence. The members of the new ERN ReCONNET…...The European Parliament’s public health committee kicks off its survey on rare diseases
The purpose of this public consultation is to provide a basis for the forthcoming work of the Committee on Public Health (SANT) in bringing a better understanding and detailed knowledge of the challenges of persons affected by rare diseases and views of persons working with or involved in rare diseases. The online survey can be filled in…...
ERN ReCONNET celebrates Rare Disease Day 2025
ERN ReCONNET celebrates the Rare Disease Day lighting the Leaning Tower of Pisa. ERNs stand close to all those living with a rare disease. Rare is many. Rare is strong. Rare is proud. ...
Meet our new UCTD ePAG Advocate Ramona Luciu
Welcome to Ramona Luciu, the new ERN ReCONNET ePAG Advocate representing UCTD! Ramona Luciu is from from Romania, she has been diagnosed with UCTD in 2021 and she represents the UCTD patient community. Ramona is a member of the ART Association (Association of Patients with Inflammatory Rheumatic Diseases in Transilvania) and she has a degree in…...
New Booklet on ERNs published by the European Commission
Just a few days ahead of the 2025 Rare Disease Day and the European Commission has recently published a series of documents on Rare Diseases, including a new Booklet "European Reference Networks. A success story for patients living with a rare disease". Find out more about ERN ReCONNET and other ERNs at this link: https://lnkd.in/dDeVvd9g…...
ern.reconnet(at)ao-pisa.toscana.it
ERN ReCONNET Stories
Are you a patient living with a rare or low-prevalence connective tissue disease? Tell your story! Among other initiatives, the ERN ReCONNET is working on the development of organisational patient’s pathway models for rare connective tissue diseases (rCTDs) covered by the Network. The organisational patient’s pathway models will be developed following the RarERN Path methodology, developed by the…...
New ERN ReCONNET Strategic Board
The new ERN ReCONNET Strategic Board We are pleased to announce the composition of the new ERN ReCONNET Strategic Board. We extend our warmest congratulations to the new members of the Board for their commitment and look forward to their contributions in guiding the network towards continued excellence. The members of the new ERN ReCONNET…...
The European Parliament’s public health committee kicks off its survey on rare diseases
The purpose of this public consultation is to provide a basis for the forthcoming work of the Committee on Public Health (SANT) in bringing a better understanding and detailed knowledge of the challenges of persons affected by rare diseases and views of persons working with or involved in rare diseases. The online survey can be filled in…...
ERN ReCONNET celebrates Rare Disease Day 2025
ERN ReCONNET celebrates the Rare Disease Day lighting the Leaning Tower of Pisa. ERNs stand close to all those living with a rare disease. Rare is many. Rare is strong. Rare is proud. ...
Meet our new UCTD ePAG Advocate Ramona Luciu
Welcome to Ramona Luciu, the new ERN ReCONNET ePAG Advocate representing UCTD! Ramona Luciu is from from Romania, she has been diagnosed with UCTD in 2021 and she represents the UCTD patient community. Ramona is a member of the ART Association (Association of Patients with Inflammatory Rheumatic Diseases in Transilvania) and she has a degree in…...
New Booklet on ERNs published by the European Commission
Just a few days ahead of the 2025 Rare Disease Day and the European Commission has recently published a series of documents on Rare Diseases, including a new Booklet "European Reference Networks. A success story for patients living with a rare disease". Find out more about ERN ReCONNET and other ERNs at this link: https://lnkd.in/dDeVvd9g…...
