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We would like to introduce you to our new Patient Engagement Manager: Tamara SHEPHERD  who will manage interactions between the PAB, patient representatives and the EURO-NMD coordination team. We look forward to working with her.

Tamara is French-Australian, she has a background in International Law and Public Affairs. During the last year of her studies, she worked in a pharmaceutical company focused on HIV where she had the opportunity to work with patient organizations.

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The ERN EURO-NMD has produced a series of educational videos on rare peripheral neuropathies to raise awareness, primarily among general practitioners, who play a decisive role in patient care as first line professionals.

Rapid referral to a specialist in an expert centre will often reduce diagnostic wandering and, in some cases, enable appropriate and early management, thus limiting the worsening of the disease and improving patients’ quality of life.

These videos are also directed towards patients and their representatives, with the aim of providing them with a variety of useful information, recommendations, and good practice.

They also feature testimonials from patients, as well as  clinicians with expertise in the field of rare peripheral neuropathies, who provide detailed information about the care and treatment options available to patients.

Translations in 10 languages will soon be available, so stay tuned!

Dear EURO-NMD board representatives, affiliated partners and executive committee members,

On behalf of Teresinha Evangelista and the Paris coordination team, it is a great pleasure to invite you to our next online board meeting:
    
⚠ (NEW DATE) ⚠
Wednesday, November 15^th, 17-19h CET

We will present the work packages of the new grant 2023-2027, and give an overview of the ERNs five-years-evaluation process and outcomes.

The detailed agenda and the zoom link of the meeting will follow closer to the date.

Please remember that participation in the board meeting is mandatory for Board members (you may be represented).

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The MYO-MRI Imaging in Neuromuscular Disease Conference will take place from 5-7 November, 2023 in Berlin, Germany.

The conference aims at promoting exchanges between radiologists, neurologists, biologists, physicists, engineers, and other scientists involved in neuromuscular imaging, particularly (but not exclusively) focusing on MR imaging and spectroscopy.
The main topics selected for the 2023 edition are: emerging imaging approaches, other imaging modalities, dynamic imaging, and clinical research.

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INSPIRE NMD provides a forum to share our skillsets with the aim of improving the quality of psychosocial care offered to people with slowly progressing NMD. I wanted to offer some introductory ACT training to the group, since this is where my expertise lies. Also, we recently completed a randomised controlled trial – with people with FSHD, IBM, BMD and LGMD – that showed ACT can improve quality of life and mood (Rose et al., 2023).

What is ACT?

ACT is a newer type of cognitive behavioural therapy that aims ...

The World Muscle Society (WMS) is delighted to invite you to the 28th International Annual Congress of the World Muscle Society that will take place 3rd – 7th October 2023, in Charleston, South Carolina, United States.
This 5-day meeting will be an opportunity to catch up on the latest developments in neuromuscular diseases from all around the world.

The main thematic topics of this congress focused on translational medicine are:

Topic 1: Understanding phenotypic and genetic diversity in neuromuscular disorders
Topic 2: Pathobiology of neuromuscular repeat expansion diseases
Topic 3: The effect of lifestyle, exercise and nutrition on neuromuscular pathology and outcomes

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The ICNMD International Congress on Neuromuscular Diseases is organized on behalf of the Specialty Group on Neuromuscular Diseases (NMD) of the World Federation of Neurology (WFN). Since 2014, the Congress has taken place in a two-year cycle.

The aim of the ICNMD Congresses is to offer attendees an updated view on neuromuscular disorders and that networking opportunities increase their international experience and collaborations. The scientific and program committee are invited from all continents around the world to enable this wide spectrum.

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Under the Horizon Europe Framework Programme, a new two-stage call for proposals for “Establishing novel approaches to improve clinical trials for rare and ultra-rare diseases” was published on 27 July, 2023.

The project generated from the topic should not only develop capacities and capabilities to execute innovative trial designs, but also plan to identify solutions to address scientific gaps as well as technical and operational challenges, and to collaborate/find synergies with relevant existing initiatives to establish a new, dedicated, rare disease specific and sustainable infrastructure...

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The Food and Drug Administration’s (FDA) Office of Orphan Products Development (OOPD) is pleased to announce availability of funds for fiscal years (FY) 2023 – FY 2025 to support clinical trials for rare diseases and conditions. The purpose of this funding opportunity announcement is to fund clinical trials of products evaluating efficacy and/or safety in…