Meeting Report from Myology 2019

EURO-NMD at European Academy of Neurology in Oslo

We are delighted to announce that representatives of EURO-NMD will be at the European Academy of Neurology in Oslo, Norway 29th June - 2nd July.

Throughout the four days of the congress EURO-NMD will have an information booth and we would love it if you would drop by to say 'Hi' and find out a little more about our network and how it benefits the neuromuscular community.

For those of you affiliated with the network and would like to find out about Clinical Patient Management System (CPMS) our helpdesk staff will be on hand to help out. You will be able to see the CPMS in action, have your questions addressed and receive one-to-one help with the different aspects of the system. To arrange a meeting to look at the CPMS whilst you are in Norway then please contact Chloe Blewitt or alternatively 'call in' to the booth when you're passing!

Experts meet to discuss FAIR data for Duchenne

The World Duchenne Organisation (WDO) and several of its members have been advocating for better use of Duchenne data, which is currently kept in silos.

WDO does this by bringing this subject to the attention of the EU lobby, by developing tools enabling better data sharing, such as the Duchenne Data platform, and organizing meetings on how to enhance data sharing for Duchenne. On March 21 and 22, 2019 during a meeting the FAIR initiative, the Personal Health Train and next steps related to data visiting were discussed at our meeting in Amsterdam attended by representatives of registries, patient advocate leaders, clinicians, scientists, companies and regulators.

WDO are currently planning a manifesto, a 'Bring your own data' workshop and extensive meeting report. We recommend that anyone interested in this area not only visit the WDO website but also sign up to the WDO newsletter to ensure they find out about any developments in this exciting area.

10 reasons to join Share4Rare

We increasingly use the internet as a resource for health information. We also use social media platforms to connect with others living with similar conditions. However, we cannot always be certain that what we are reading is from a trustworthy source or that social media platforms are protecting our privacy.

Share4Rare is a new digital platform that aims to address the needs of patients, families and researchers. The platform will provide accurate information about rare diseases and provide a safe space to interact and share information.

Why should you join Share4Rare if you are a patient or a relative?

1. S4R is a European Commission funded project under the leadership of the coordination team at Hospital Sant Joan de Déu Barcelona.
2. Patients and patient advocates have participated in the design and development of the platform through co-design workshops.
3. The platform connects users across diseases and geographic locations.
4. The platform guarantees confidentiality.
5. S4R has the approval of the Ethics and Research Committee of Fundació Sant Joan de Déu.
6. Only authenticated users can participate in the platform.
7. The S4R patient advocacy toolkit empowers patients to participate in, drive and lead research initiatives.
8. Access to accurate, up to date medical content.
9. Participate in contributing data to help develop new research.
10. Promotion of research initiatives based on clinical data donation.

You can also find out more about this unique and innovative project from their latest video which has recently been released.

EURO-NMD CPMS Update

The main focus at the moment is to continue creating panels and for users to begin accessing the system on a regular basis to familiarise themselves with the system and contribute to panels.