Newsletter - February 2019
 
Newsletter - February 2019
 
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Rare Disease Day 2019!!

Tomorrow is Rare Disease Day 2019 and around the world many awareness raising events have been organised. We would like to wish everyone involved all the very best, we hope you have a very successful and enjoyable day.

This year's theme is 'Bridging health and social care'.

For most people living with a rare disease, as well as their family members or carers, the reality of daily life can include any combination of the following: collecting and taking medicines, attending appointments, participating in physical therapy, using specialist equipment and accessing various social and community support services and respite care. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.

Even if you haven't organised anything you can still take part by visiting an event in your area or finding out more about rare diseases, visit the Rare Disease Day website.

 
 
 
 
 

Project Manager - EURO-NMD

Project Manager for EURO-NMD based at the Institute of Myology, Paris

Located in Paris at the heart of the largest European hospital, Pitié-Salpêtrière, the Institute of Myology was created in 1996 by AFM-Telethon, a patient’s organization. Its goal: Promote Myology and have it accepted as a standalone clinical and scientific discipline. The Institute of Myology coordinates, around the patient, medical care, basic research, applied research, clinical research and teaching.

Main Purpose

This management post within the Institute of Myology leads the strategic development and delivery of the EU-funded project European Reference Network (ERN) EURO-NMD to ensure the deliverables and objectives of this multinational project are achieved. This role will require an overarching view on all relevant international activities and liaising closely with key stakeholders to ensure the needs and input of EURO-NMD are coordinated and addressed. This will be achieved by providing a point of contact and comprehensive professional support service, on an international level, between the European Commission, local, national and international experts. It includes direct line management and development of the coordination team as well as the overall coordination of 61 European Health Care Providers (HCP), the Patient Advisory Group (PAG) and a smaller Executive board. The post holder reports internally to the EURO-NMD Coordinator (PI), with external responsibility to the European Commission, and is supported by the EURO-NMD coordination team.

EURO-NMD Project Manager Job Description

 
 
 
 
 

Project Assistant – EURO-NMD

Project Assistant for EURO-NMD based at the Institute of Myology, Paris

Located in Paris at the heart of the largest European hospital, Pitié-Salpêtrière, the Institute of Myology was created in 1996 by AFM-Telethon, a patient’s organization. Its goal: Promote Myology and have it accepted as a standalone clinical and scientific discipline. The Institute of Myology coordinates, around the patient, medical care, basic research, applied research, clinical research and teaching.

Main Purpose      

Supervised by the Coordinator and project manager the main objective of this post is to provide support to the European Reference Network, EURO-NMD, and the Coordination team. This role will provide administrative support to the Coordination team at the Institut de Myology

Main Duties and Responsibilities

  1. Provide comprehensive organisational support to the EURO-NMD team.
  2. Act as first point of contact for the team, dealing directly with email and telephone enquiries.
  3. Provide comprehensive administrative support.
  4. Organise, maintain and continuously review office procedures (e.g. clerical support, filing, databases).
  5. Organise travel, accommodation and registration arrangements.
  6. Manage and monitor systems to ensure a smooth day-to-day working environment.
  7. With the Project Manager, and the Institute finance team, take responsibility for documenting project spending and handling purchase requisitions for network-related costs.

EURO-NMD Project Assistant Job Description

 
 
 
 
 

CPMS Helpdesk

  CPMS Helpdesk

The Clinical Patient Management System is now available to use and healthcare professionals can begin using the platform. A Helpdesk website has been set up in order to assist with any queries or problems users may experience when trying to use the system.

For further information regarding the CPMS and how to request access please visit the CPMS webpage by clicking here.

The Helpdesk has been set up to assist with the registration and utilisation of the Clinical Patient Management System as there are a range of different applications required to become a user. Furthermore, since the system is still quite new this means there are some occasional errors and bug problems which users may experience and so the Helpdesk website can be used to notify staff of any errors.

The Helpdesk website can be accessed via the following link: https://helpdesk.ern-euro-nmd.eu

Alternatively, a Helpdesk email has also been set up to contact Helpdesk staff directly: support@ern-euro-nmd.eu

This email address is monitored Monday-Friday and can be used in order to raise any queries to the Helpdesk Team. Any correspondence from the team such as information from the European Commission or updates will be sent from the Helpdesk email address.

The CPMS Helpdesk website is designed to be easily accessible and user friendly. Frequent users are able to create an account on the software in order to store any queries to refer back to. The website also includes FAQs which include questions on using the CPMS and registering onto the system.

If you have a particular query or problem with regards to the CPMS you can request help from the Helpdesk staff by selecting "Open New Ticket".

You will then be required to fill in some required information fields such as:

-Your name

-Your email address

-Subject and Comment

There is an option to select a specific department for tickets to go through to, however the Helpdesk team will monitor all of these so don't worry about selecting the correct option too much.

It's recommended to send screenshots of any problems or issues you're facing such as if you're receiving an error message or having trouble navigating around a certain page. This allows the Helpdesk staff to see exactly what you're seeing.

Once you're ready select "Open New Ticket" at the bottom of the page.

 
 
 
 
 

Rare 2030 project launches to look at future European RD policy

The Rare 2030 project will forecast policy scenarios for the future of rare diseases over the next 10-20 years. The project will ensure a very broad and holistic view of the rare disease field in Europe, in order to produce Recommendations to address gaps and needs.

These Recommendations will hopefully guide future European and national approaches to improving the diagnosis, treatment and care of rare diseases in a changing world.

The ERNs are now an essential part of the rare disease landscape; consequently, representatives of all Networks will be invited to participate in consultations and review of the status quo, in order to identify drivers of change and future determinant of health and wellbeing for people will rare diseases     

 
 
 
 
 

Still time to apply for the DMD Expert Masterclass

 

There is still time to apply to attend the 5th masterclass in Duchenne muscular dystrophy (DMD) which will take place at the Movenpick Hotel Amsterdam City Centre, the Netherlands, on Thursday 16th and Friday 17th May 2019.

The masterclass is suitable for health care professionals and researchers who are involved in DMD care and research (both paediatric and adult).

The draft programme can be seen here

If you would like to apply for a place, please complete the application form

Travel and accommodation will be covered and places are highly competitive so it is important that this workshop will have significant impact on your work. Places will be allocated based on the widest benefit to the DMD patient community and will be decided on by the TREAT-NMD Education Committee (TEC). You will be asked to explain how the Masterclass will benefit your work as part of the application process.

If you have any questions please contact the DMD Liaison Officer Cathy Turner at the John Walton Muscular Dystrophy Research Centre, Newcastle University, UK: catherine.turner@ncl.ac.uk

Closing date for applications is 1st March 2019

 
 
 
 
 

Next ENMC workshop application deadline is Friday 1 March 2019

ENMC  

ENMC workshop applications can be submitted the whole year through. The next deadline for sending in applications for workshops is 1 March, 2019.

Further information about how to apply along with the necessary forms can be found on the how to apply page on ENMC's website.