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

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