We are conducting a survey in order to get a better understanding on the knowledge and use of Patient-Reported Outcome Measures (PROMs) by the healthcare professionals participating in the ERN EURO-NMD network of healthcare providers (Full Members and Affiliated Partners). 

The survey results will be used to  select the appropriate PROMs instruments for inclusion in the EURO-NMD registry. The EURO-NMD Registry is the platform that has been built to collect data from patients treated within the EURO-NMD healthcare providers to facilitate clinical and research activity and assist in monitoring the quality of care and patient outcomes.

Survey for patients: Unmet needs of rare and complex diseases related to pregnancy and family planning for patients and caregivers :

(Available in 7 languages)

ERN Euro-NMD is participating in a transversal cross-ERN Study Group on Pregnancy and Family Planning in Rare, low prevalence and complex diseases.

The resulting surveys have the aim of collecting Europe - wide evidence on the management of this specific condition and bringing crucial added value in the lives of RD patients across Europe.

Completing and / or disseminating the survey is a great opportunity for you all to contribute to the important topic of pregnancy and we really appreciate your feedback.

If you would be so kind to also share these with European-based patients and patient organisations, that would be most helpful.

📢 The deadline has been extended to May 15th!

Dear Euro-NMD members,

We are happy to announce that on July 6th of 2022, ERN EURO-NMD, the European Reference Network for Rare Neuromuscular diseases, will held a Board Meeting back-to-back to the 17th International Congress on Neuromuscular Diseases (ICNMD 2022) at Square - Brussels' Convention Centre in Brussels, Belgium. This will be the first face-to-face meeting of the network since the pandemic and the first networking event under the new ERN grant scheme.

We remind that participation to the board meeting is mandatory for the representative of each of the HCP and the PAB. The discussion is open to all members of the ERN EURO-NMD but only the board members have voting rights.

Following the ERN’s motto: “knowledge travels, not the patient” we are pleased to announce that the EU is funding an Exchange Training Programme. Through this programme your travel costs will be financed, and you will receive a daily allowance of 200€ per working day for your accommodation, travel insurance and subsistence costs.

UPCOMING Euro-NMD 2022  WEBINARS

MAY 2022

Thursday May 12th – 16:00-17:00 Paris time

"Primary Mitochondrial Myopathies" Delivered by Prof. Michelangelo Mancuso

Currently Prof. Mancuso is Neurologist at the Neurological Clinic of Cisanello Hospital and Associate Professor of Neurology at the University of Pisa.
Since 2013 he is the Physician in charge of the Ambulatory for Cerebrovascular Diseases and of the Doppler Laboratory of the Neurological Clinic of the Azienda Ospedaliera Universitaria Pisana.

He mainly deals with cerebrovascular, neuromuscular and genetic diseases, including mitochondrial diseases. He also has extensive experience in the diagnosis and treatment of headache.

Tuesday 24 May 2022, 3-4pm CET

Mitochondrial leukodystrophies by Anna Ardissone
The speaker is a Child Neurologist at the Institute of Neurology Carlo Besta, Milan, Italy.

The 8th EAN Congress is an European meeting that brings together neurologists and neuroscientists with the aim of networking and exchanging knowledge to address the biggest challenges in neurology. They have planned a meeting with a pan-European flavor, celebrating the opportunity to meet once more in person in a hybrid meeting that will also maximise virtual participation. It will take place on June 25 to 28, 2022 in Vienna, Austria !

Come and meet us and discover all our projects at booth X526 in exhibition Hall X5! 

Since the latest international standards of care for Duchenne Muscular Dystrophy (DMD) were published in 2018, which prompted greater emphasis on regular vertebral fracture monitoring and early treatment of bone morbidity, the landscape of DMD care has changed. This symposium aims to review the evidence base that informed the 2018 international standards of care, best practices for implementation of these care considerations, and emerging knowledge that has arisen from research in the past two years.

The overall aim of this dialogue is to identify barriers to implementation of these “minimum standards of bone health care” worldwide, and to discuss future strategies that will move the dial on optimal management to foster bone strength and prevent fractures in this setting.

– Thursday 3rd November 2022 (17:00-20:00 GMT)
– Monday 14th November 2022 (17:00-20:00 GMT)

This combined webinar & workshop will provide an update on Solve-RD Sandbox services/functions, and also consider future plans, needs and possibilities. Intended participants include ERN data controllers/producers (to ensure that their data is being managed in ways they are happy with) and DITF members (to ensure they have services they need now and going forward). Thursday, 19 May 2022, 14:00 - 15:30 CEST

ERICA aims to promote collaborative inter- ERNs research projects. It is therefore crucial to have a centralised location to announce any new project and search for collaborators. A specific web page has been created for this purpose on the ERICA website Research Wall (Please note that the current page only contains examples)

It provides basic information about the open calls for collaboration as well as contact details of the project PI. If you have any new inter- ERN project that you wish to advertise via this research wall, please fill the excel file with the project you wish to advertise and return to ERICA Coordinating office

Please note that only inter- ERNs collaborative projects will be advertised via this research wall.

From DG Health

“DG Health is looking for solutions that guarantee a high level of security and easier access to the CPMS. In the context of the quick wins we’re continuously implementing in the current CPMS, we’re analysing the possibility to reduce the number of authentication methods proposed to access the system.

We are therefore inviting you to fill the survey about EU Login use and habits.

This small survey (max 3 minutes) is very valuable for the DG Health team in order to display the authentication methods that are the most relevant for you.”

Please participate if you are a user, this feedback will help us all, as the CPMS is a central clinical management tool for EURO-NMD.

Thank you.

Our health care providers, particularly those located in the countries currently receiving large numbers of refugees are ready to help Ukrainian patients with rare diseases for specific diagnostic procedures and treatment.

This is a joint initiative of all 24 ERNs.

The European Commission launched the European Health Data Space (EHDS), one of the central building blocks of a strong European Health Union. The EHDS will help the EU to achieve a quantum leap forward in the way healthcare is provided to people across Europe.

It will empower people to control and utilise their health data in their home country or in other Member States. It fosters a genuine single market for digital health services and products.

And it offers a consistent, trustworthy and efficient framework to use health data for research, innovation, policy-making and regulatory activities, while ensuring full compliance with the EU's high data protection standards.