EURORDIS recherche un Chef de projet senior, Paris, France

EURORDIS recherche un Chef de projet senior, Paris, France

About EURORDIS-Rare Diseases Europe

EURORDIS is a unique, non-profit alliance of over 900 rare disease patient organisations from over 70 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research policies and patient services.

The EURORDIS Board of Directors has confirmed that responding to this crisis in Ukraine is at the core of the EURORDIS’ mission and values. It is believed that the overall situation might worsen, with many people with rare diseases and their carers being unable to travel to another country or access essential medicines and basic necessities in Ukraine and those who are able to leave the country facing challenges related to displacement.

Scope of the programme

EURORDIS’ response is two-fold: both immediately responding to the needs of people living with rare diseases and advocating on behalf of their specific needs with the support of our multistakeholder networks.

EURORDIS activities are fast evolving and subject to change as our understanding of needs evolve.  Current initiatives include:

• Developing and curating information to develop Decision Support Tools that help Ukrainians living with rare diseases (LWRD) navigate the different health and social care policies available across EUROPE and how they can access care
• Facilitating (where and if possible) solutions for getting Medicines into Ukraine and vulnerable people out.
• Mobilising our network of patient organisations, companies, European Parliamentarians and external stakeholders by sharing information on the needs of vulnerable people and best practices for addressing key challenges.
• Identifying volunteers who can be deployed by EURORIDS and our partner organisations to help individuals to navigate care pathways outside of Ukraine or to translate medical records (among others)
• Managing individual requests from patients either by helping them find appropriate organisations or problem solving as best we can.
• ‘Rare BNB’:  where we identify families in Europe who understand rare diseases and are happy to host a patient family coming from Ukraine and match these with people looking to leave Ukraine or to leave border countries, especially Poland, where facilities to treat patients with complex needs are already under strain.
• Advocating on behalf of Ukrainians living with a rare disease through the media, parliamentary networks, and direct outreach to governmental and non-governmental organisations, departments and institutions in Ukraine and in Europe. (For clarity, this position links with advocacy teams, provides them with evidence, but does not lead the advocacy work).

Scope of the position

The Senior Project Manager (SPM) will be a self-motivated, highly organised and resourceful person with experience in managing fast-evolving projects and the rare disease landscape. The ideal candidate should have substantial experience with crisis response. The candidate must speak excellent English and ideally one of the following three languages: Ukrainian, Polish and/or Russian.

This senior project manager will serve as a focal point to co-ordinate and drive our activity in response to the war in Ukraine.  The SPM works closely with the Chief Operating Officer, who is the overall lead for our response, as well as with the internal EURORDIS Ukraine Task Force, who bring diverse experiences and a connection into other parts of EURORDIS, including advocacy, communications fundraising and operational links to external stakeholders and with EURORDIS’ Public Affairs team.

A member of the Ukraine Task Force, the SPM takes day-to-day responsibility for the operational components of our response and makes a link into our advocacy and communications teams.  S/he helps us to refine our priorities and activities based on need.

Key tasks & responsibilities

• Leads on the compilation of information resources that support PLWRD coming from Ukraine and the patient organisations that support them. This includes:
  • Conducts outreach to other organisations that are developing information resources, including ERNs, other patient organisations, or public institutions
  • Makes research online or by phone to fill gaps in our understanding of the realities on the ground as they evolve
  • Curates our online Ukraine resource centre, from the perspective of families from Ukraine LWRD needing information to help access help or make decisions about where to go
  • Collects, writes up and publishes ‘testimonials’ which help all stakeholders to understand the nature of the issues being faced
• Coordinates the internal EURORDIS Ukraine Task Force. This includes both the organisation and secretariat of this meeting but also documenting next steps and following up with actions.
• Helps us establish a cadence for updating stakeholders, including statements, webinars for Patient organisations and companies, and other stakeholders. Works with the various EURORDIS teams to make sure these meetings are scheduled and helps prepare the content so we’re facilitating the flow of information.
• Develops relationship with key actors in our network and plays a hands-on role in implementing the volunteer call and rare bnb by connecting opportunities with need.
• Helps us to identify and co-ordinate volunteers or consultants who can help us to open aid corridors to Rare Disease and humanitarian organisations
• Links with EURORDIS’ Public Affairs team to help define advocacy messages and especially to ensure actions are followed through
• Helps problem-solve and case manage difficult responses (in partnership with the Membership Senior Manager)
• Time allowing, helps us understand how to better respond to future crisis