During our Board Meeting a few weeks ago, our members had the pleasure of meeting in person after a while and welcomed the new members of the EURO-NMD. Our coordinator shared a few words on this subject during the event:

"It was fantastic to see you all again at the EURO-NMD Board meeting in Brussels last Wednesday, July 6th. It was impressive to see what a big network we have become: 84 members in 25 countries! The EURO-NMD coordination team and I would like to thank you for being present, despite the odds of the sanitary situation. Big thanks for their efforts to those intending to join us but had to abandon for health and strike issues. Thank you for being present and committed to our EURO-NMD network."

Teresinha Evangelista - EURO-NMD Coordinator

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. This Exchange Programme foresees 5 training days in another facility of the network which can be extended up to six weeks. The target population for this programme are healthcare professionals from ERN Euro-NMD, and in specific cases, patient representatives.

Here is how it works:

We have produced 8 videos explaining the use of the CPMS to facilitate understanding of the CPMS platform. You will find brief and easy-to-follow videos of around 2 minutes duration each. No more sitting through endless videos about what you already know, patiently waiting to learn something new. Choose your subject and watch just what you need to know.

ERN EURO-NMD is looking for a Senior Project Manager M/F. The purpose of the Senior Project Manager position is to accomplish the objectives defined in the EU grants of the EURO-NMD. This involves ensuring proper functioning, development and implementation of the network activities in cooperation with the ERN members. 

Come and work with a great TEAM in the heart of a unique European capital!

ERN EURO-NMD is participating in a transversal cross-ERN Study Group on Pregnancy and Family Planning in Rare Diseases. 

The survey we present aims at collecting European-wide evidence on managing pregnancy and family planning for RD families.It is a survey for patients on "Unmet needs of rare and complex diseases related to pregnancy and family planning for patients and caregivers".

If you were so kind as to share this survey with European-based patients and patient organizations, that would be very helpful.

📢 The deadline has been extended ! 

In partnership with ERN-RND, ERN Epicare and EAN, we are pleased to announce that we will be participating in the World Mitochondrial Awareness Week 2022 with a series of educational webinars delivered by experts. Registrations are open:

Thurs September 1st 16:00-17:00 Paris time

Mitochondrial Epilepsy

Wed September 21st 16:00-17:00 Paris time

Mitochondrial Movement Disorders

Thurs September 22st 16:00-17:00 Paris time

Mitochondrial Genetics

Thu September 29th 16:00-17:00 Paris time

Mitochondrial Optical Neuropathies

Tuesday 13 September 2022, 3-4pm CEST

Vanishing white matter by Marjo van der Knaap
The speaker is Full Professor of Pediatric Neurology and head of the research group 'white matter diseases in children' at the Amsterdam University Medical Center in the Netherlands.

Tuesday 20 September 2022, 3-4pm CEST

Tau-targeting Therapies: Where are we heading to? by Günter Höglinger
The speaker is Full Professor and Director of the Department of Neurology at the Hannover Medical School, Germany. He is also a research group leader at DZNE (German Center for Neurodegenerative Diseases) in Munich. He conducts research in the field of neurodegenerative Parkinson syndromes with the goal of understanding the molecular mechanisms leading to the development and progression of neuronal dysfunction and death and of using these findings for diagnostic and therapeutic purposes. His particular focus is the interface between preclinical and clinical research.

Tuesday 27 September 2022, 3-4pm CEST

Clinical and genetic predictors of subthalamic nucleus deep brain stimulation in Parkinson's disease by Daniel Weiß
The speaker is Professor at the University of Tübingen and leads the working group on deep brain stimulation at the Hertie Institute for Clinical Brain Research in Tübingen, Germany.

The "All ePAG meeting" will be held online from 14-17 November 2022.

This year's theme is "How to get better at listening to your community to represent their needs and perspectives". 

It was inspired by a guide co-developed by EURORDIS and the ePAG community: Speak Up. Listen Up. Follow-Up guide: A brief guide for rare disease patient organisations on how to listen to the community.

Throughout the week, we will reflect on why listening to your community matters, how to best capture my community's voice and where to start and celebrate some excellent examples from different perspectives.

To know more, check the 👉 meeting's agenda.

The World Muscle Society is delighted to invite you to attend the 27th International Hybrid Annual Congress of the World Muscle Society that will take place 11th – 15th October 2022, in Halifax, Nova Scotia, Canada. The congress venue is the Halifax Convention Centre at 1650 Argyle Street, in the heart of this Atlantic seaport. For delegates who wish to attend virtually, the presentations and e-posters are available via the Congress platform and app.

The main thematic topics that will be addressed in the plenary sessions are :

1. New Developments in Congenital Muscle Disease 

2. Neuropathies and Non-5q Motor Neuron Disease

3. The Development of Therapeutic Approaches

AFM-Telethon is pleased to announce that it will hold its 7th International Myology Congress in person, from September 12th to 15th, 2022 at the Nice Acropolis Congress Center, followed by mitoNice from September 15th to 17th, an international congress dedicated to Mitochondrial Medicine. A joint session in the afternoon of September 15th will ensure a smooth transition between the two congresses.

ERN EURO-NMD  will have a booth. We will tell you very soon where you can find us.
We look forward to seeing you there !

IRDiRC has four Scientific Committees, one each for Diagnostics, Therapies, Interdisciplinary, and Regulatory aspects of rare diseases research. The Diagnostic Scientific Committee (DSC) identifies current and future bottlenecks to rare disease gene discovery, addresses challenges and roadblocks in rare disease diagnosis, and collaborates with international partners to develop tools and resources to facilitate genomic data discovery, analyses and sharing.

IRDiRC is looking for clinicians and experts in genetics, genomics, bioinformatics, molecular diagnostics, and biochemistry who can commit to quarterly teleconferences, a yearly face-to-face meeting, and regular committee activities, including email correspondence.
Interested candidates are invited to send their resume, biosketch and letter of motivation to  scisec-irdirc@ejprarediseases.org  before the  14th of August 2022.
More information about the The  Diagnostic Scientific Committee (DSC) : https://irdirc.org/dsc/

The Networking Support Scheme (NSS) of the European Joint Programme on Rare Diseases is funding quarterly networking initiatives in the field of rare diseases and rare cancers, bringing together health care professionals, researchers, patient advocacy groups, Early Career Scientists and other relevant stakeholders.

You can submit your application from July 1, 2022  for events between February 15, 2023 and September 1, 2023.

The last collection dates for the Networking Support Scheme in EJP RD will be September 1, 2022 and December 1, 2022.