Standing on the shoulders of EJP RD and previous partnerships
The rare diseases landscape has dramatically changed over the past decade in Europe, thanks largely to the work done by the European Joint Programme for Rare Diseases (EJPRD) and previous partnerships in advancing basic research and clinical applications, fostering patient engagement and enabling important international collaborations.
More specifically, EJP RD mobilised 101 million euros (55 million came from the EU) to fund collaborative research projects. The partnership has also developed a cutting-edge virtual platform that now provides coordinated access to rare disease data, tools and resources. To build the capacity of all stakeholders involved in rare disease research, EJP RD has provided training, mentoring and clinical studies support services, as well as resources such as the Innovation Management Toolbox or the Rare Diseases Clinical Trials Toolbox . Finally, the partnership has proved crucial for aligning international research policy agendas with national strategies.
However, work is far from done. There are still considerable gaps that affect millions of people living with a rare disease and, indirectly their families, carers and society as a whole.
These are the staggering figures today:
There are about 7000 rare diseases affecting over 300 million people worldwide
a vast majority of rare diseases lack a therapeutic option
4 years is the average time it takes to get a diagnosis for known rare diseases
50% of patients do not have a confirmed molecular diagnosis
For 52% of patients and carers, their condition has a severe impact on their daily lives
Our Vision
To Bring New Hope for Rare Diseases Patients
Better prevention, better diagnosis, better treatment. This is our pledge to the over 30 million people living with a rare disease in Europe.
We represent over 180 organisations from 36 countries working closely together with a shared vision of making Europe a world leader in rare diseases research and innovation to ultimately support concrete health benefits to rare diseases patients through improved prevention, diagnosis and treatment.
Our Mission
To transform rare disease research and care in Europe
Building on the achievements of previous partnerships’, ERDERA will:
- enhance collaboration, align research funding and enable optimal integration of EU and national rare diseases strategies and plans.
- bridge the huge gap that hampers the translation of research results into cost-effective solutions that reach patients
- help reduce the fragmentation of knowledge and data and evolve towards a holistic approach to research and innovation in rare diseases.
Our Ambition
To deliver tangible solutions for better outcomes
- Diagnosis within 6 months for identified diseases or inclusion in a global diagnostic and research pipeline for unknown disorders.
- 1000 new therapies approved to offer a treatment to the currently 95% rare diseases with no therapeutic option available. This means expediting clinical trial readiness and regulatory fit to pave the way for approval.
- Better evaluation and understanding of the impact of RD on patients, families and health care systems to inform policy decisions.
Our Roadmap
- Enabling patient-need led science by providing a rare diseases research support pipeline from basic research to clinical trial readiness
- Improve understanding of rare diseases impact and the potential benefit of new interventions.
- Combining financing of research by public and private funders.
- Building on existing infrastructures encompassing ERDRI, the EJP RD Virtual Platform, RD-Connect, and services not specific for rare diseases (e.g., BBMRI-ERIC).
- Promoting advanced data analysis and data interpretation methods and approaches (both federated and centralised) that exploit this ecosystem.
- Enhancing the development of data-driven computational tools, statistical and AI methods, as well as digital solutions to understand the diseases progression, to solve undiagnosed rare disease cases and implement new clinical studies or trials designs for small populations.
- Ensuring an inclusive route and sufficient resources to empower those affected by a rare disease and their representatives as equal partners in research, involving them in all governance and implementation stages of ERDERA, offering training or orientation as needed.
- Establishing a structured and flexible framework for patient engagement in research (including funding).
- Building new or expanding existing networks and supporting dedicated research to address inequities in the study of various types of rare diseases.
- Enabling stakeholders participating in projects financed through ERDERA competitive calls of performing in house research activities to upgrade their scientific, technology and regulatory knowledge through capacity building activities.
- Providing and accredited, comprehensive and high-quality online education programme for rare disease researchers, using existing modules and developing new ones.
- Stepping up the integration of industry, regulators and payers into the existing rare disease community.
- Expanding the rare diseases research network and opportunities to more countries and stakeholders, attracting more resources, know-how and talent.
- Facilitating the adoption of good practices at the national and regional level through rare diseases National Mirror Groups (NMGs).
- Ensuring coherence and impact of all actions through adequate coordination, governance and advisory structures…
Explore professional opportunities at ERDERA
Office Manager (bilingual)
Joining Inserm means joining an institute committed to parity and professional equality, diversity and support for its employees with disabilities, from the time of recruitment and throughout their careers. In order to preserve well-being at work, Inserm has an active policy on working conditions, based in particular on a fair balance between personal and professional life.
In 2016, Inserm received the European HR Excellence in Research label and is committed to changing its practices for recruiting and evaluating researchers.
| Position open to candidates | ☐ Inserm civil servants through internal mobility
☐ Non-Inserm civil servants on secondment ☐ Fixed-term contract staff |
Category | J – Management and Steering |
| Body | Research Engineer (IE) | ||
| Job-type | Administrative Manager | ||
| RIFSEEP (civil servant indemnity scheme) | Function:
Group: Domain: |
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| Department/
Unit/ Institute |
THEMATIC INSTITUTE GENETICS, GENOMICS & BIOINFORMATICS |
| About the Structure | Inserm relies on 9 Thematic Institutes whose mission is to thematically develop the organization’s institutional policy.
The Genetics, Genomics and Bioinformatics Thematic Institute covers the genetics and genomics of all living organisms, from viruses, microorganisms, plants to humans. The comparison of genomes is central to understanding the complex links between genotype and phenotype, to apprehend at the molecular level the processes at play in evolution and biodiversity. The cognitive and applied perspectives are immense. The coordination and implementation of research on rare diseases is one of the favorite topics of our Institute, to which the coordination team of the European Rare Diseases Research Alliance (ERDERA) belongs: |
| Director | Emmanuelle GENIN |
| Address | 8 rue de la Croix Jarry – 75013 PARIS (BIOPARK) |
| Regional Delegation | Headquarters Administration |
| Main mission | As part of the execution and monitoring of the European “European Rare Diseases Research Alliance (ERDERA)” program (link), funded via “Horizon Europe” HORIZONHLTH-2023-DISEASE-07 as COFUND Action, Inserm is recruiting an office manager to coordinate and supervise the ERDERA team’s office by managing all administrative management in conjunction with the various departments.
His mission will be carried out within the ERDERA coordination team. o He/she assists the deputy director of the Thematic Institute of Genetics, Genomics and Bioinformatics delegated to the coordination of ERDERA o He/she is responsible for internal and external communication by managing the flow of information between the coordination team and the various departments o He/she contributes to the preparation of Inserm’s annual reporting, o He/she is responsible for the management of the general services of the office, o He/she is responsible for monitoring ERDERA’s team budgets, o He/she takes care of telephone calls, o He/she is responsible for the organization of meetings and various internal events, o He/she supports the organization of events
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| Main activities | Assistant to the management and the team:
· Support for the organization of the agenda of the Executive Assistant in charge of the coordination of ERDERA · Organization and follow-up of the manager’s and team members’ business trips (reservation of plane/train tickets, taxis, hotels, restaurants, obtaining visas if necessary, establishment of mission orders, follow-up of reimbursements of expense statements. · Implementation of procedures and support to improve the efficiency of office management and management and team support processes
Service and Service Provider Management (Office Management): · Management and follow-up of the premises’ service providers (cleaning, mail, water, etc.) · Placing orders for equipment, supplies, consumables and checking the conformity of deliveries · Management and follow-up of the team’s orders and contracts and external services (Contract management) · Creation of purchase requests and orders and receipt of orders in connection with accounting · Supervise invoicing elements, verification of collections and refunds of the management system, management monitoring · File and archive documents · Physical and telephone reception in English and French external interlocutors
Event and Travel Organisation: · Prepare and organize meetings (convocation, room reservations, reservation of guests’ plane/train tickets, order of meal trays, …) · Organize and monitor the business trips of the manager and team members in Europe (booking of plane/train tickets, taxis, hotels, restaurants, obtaining visas if necessary, drawing up mission orders, monitoring reimbursements of expense reports. · Attend (if necessary) the organization of ERDERA partners’ meetings · Participation in the organization of national and international events and congresses (preparation of badges, reception of participants, help with the need for information, management of logistics during the event…)
Budget and HR management: · Provide an alert role on the follow-up of income and expenses vis-à-vis the partner/team member. · Tracking Expense and Revenue Dashboards · Internal monitoring of team members’ contracts (interface with the HR department for recruitment, renewals, etc.) · Assist the Administrative and Financial Manager of ERDERA · Onboarding process for new arrivals.
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| Specificity(ies) and environment of the position | English environment, good command of English (oral and written) required
Many interactions: – Internally: o Works under the responsibility of the GGB IT Executive Assistant in charge of the coordination of the ERDERA program and the supervision of the Administrative and Financial Manager of the ERDERA program o As a member of the ERDERA team, together with the Management of the GGB Thematic Institute and the members of the o With the headquarters and the delegation(s) of INSERM: support functions and expense management, etc. (Finance, HR, Legal Affairs, etc.) Externally: with the partners of the ERDERA programme |
| Knowledge | · In-depth knowledge of administrative procedures
· Knowledge of management techniques · Knowledge of the office environment and mastery of office automation and budget software · Fluency in English, both written and oral · Budgetary and accounting knowledge of public finances · Knowledge of remote project management systems (e.g. MS Teams, Slack, etc.) |
| Know-how | · Know how to organize and plan your activities
· Ability to express oneself orally and write with ease · Master the techniques of restitution and transmission of written or oral information · Propose modes of organization, operation, simplification of classification · Analyze the data · Apply financial rules in accordance with current regulations · Tracking expenses and revenues |
| Skills | · Have a sense of priorities
· Diplomatic skills and excellent interpersonal skills · Organized, rigorous and dynamic · Autonomous and proactive · Great sense of service · Taste for teamwork |
| Desired experience(s) | · At least 3 years of experience as an Office Manager or similar. Very good command of English (oral and written). Knowledge of the functioning of public institutions. Ability to demonstrate a sense of priorities, good responsiveness and great rigor in the organization. |
| Degree level and training(s) | · Holder of a minimum Bac +3 |
| General Information | |
| Start date | 01/09/2024 |
| Duration (CDI) | Renewable: YES NO ☐ ☐ |
| Working time | · Full-time
· 38h30 weekly · 45 days of Annual Leave and RTT |
| Teleworking activities | ☒ YES * NO ☐
* according to current Inserm standards |
| Remuneration | · Civil servants: according to the statutory conditions (index scale and IFSE corresponding to the job)
· Contractors: Between €2,493.30 and €3,249 gross per month depending on professional experience in positions of equivalent level. |
| How to apply | |
| Application Deadline | 15/05/2025 |
Deadline: 15 May 2025
Project Manager
Joining Inserm means joining an institute committed to parity and professional equality, diversity and support for its employees with disabilities, from the time of recruitment and throughout their careers. In order to preserve well-being at work, Inserm has an active policy on working conditions, based in particular on a fair balance between personal and professional life.
In 2016, Inserm received the European HR Excellence in Research label and is committed to changing its practices for recruiting and evaluating researchers.
| Employment | ||||
| Position open to candidates | ☐ Inserm civil servants through internal mobility
☐ Non-Inserm civil servants on secondment ☐ Fixed-term contract staff |
Category | J – Management and Steering | |
| Body | ||||
| Job-type | Head of Administration and Pilotage | |||
| RIFSEEP (civil servant indemnity scheme) | Function:
Group: Domain: |
|||
| Reception structure | ||||
| Department/ Unit/ Institute | THEMATIC INSTITUTE GENETICS, GENOMICS & BIOINFORMATICS | |||
| About the Structure | Inserm relies on 9 Thematic Institutes whose mission is to thematically develop the organization’s institutional policy.
The Genetics, Genomics and Bioinformatics Thematic Institute (IT-GGB) covers the genetics and genomics of all living organisms, from viruses, microorganisms, plants to humans. The comparison of genomes is central to understanding the complex links between genotype and phenotype, to apprehend at the molecular level the processes at play in evolution and biodiversity. The cognitive and applied perspectives are immense. The coordination and implementation of research on rare diseases isone of the favorite topics of our Institute to which the coordination team of the European Rare Diseases Research Alliance (ERDERA) belongs: https://erdera.org. This European alliance is dedicated to improving the lives of the 30 million people living with a rare disease in Europe. Leveraging an integrated ecosystem, the program aims to strengthen research focused on patient needs, accelerate diagnosis, develop new treatments, and facilitate collaboration between public and private actors. Within ERDERA, the Policy Think Tank (PTT) is a platform for strategic exchanges, bringing together representatives of industry, clinicians, patients, researchers and institutional actors to identify barriers and make recommendations to promote the sustainability of investments in rare diseases. The ERDERA coordination team is also involved in RealiseD (https://realised-ihi.eu/), an innovative public-private scientific project that focuses on advanced methodological and operational aspects for clinical trials on rare diseases. RealiseD’s Work Package 7 (WP7), co-led by the ERDERA Coordinator, aims to ensure the alignment of this project with the rare disease ecosystem by establishing structured support processes, fostering synergies with other initiatives and facilitating stakeholder uptake of results. |
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| Director | Emmanuelle GENIN | |||
| Address | 8 rue de la Croix Jarry – 75013 PARIS (BIOPARK) | |||
| Regional Delegation | Headquarters Administration | |||
| Job Description | |
| Main Mission |
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| Main Activities |
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| Specificity and work environment | English environment: bilingual or minimum C1 level in English (CEFRL)
Numerous interactions:
ERDERA offers a collaborative and dynamic work environment, bringing together internationally renowned experts in the field of rare diseases. Team members benefit from an innovative platform that promotes knowledge exchange and innovation. Working within ERDERA means engaging in projects with significant social impact while operating in an international framework with opportunities for collaboration with prestigious institutions, leading researchers, and patient organizations. The environment is enriched by a culture of mutual support, continuous professional development, and the use of cutting-edge technologies to achieve ambitious research and training goals. |
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| Abilities |
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| Desired Experience(s) |
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| Degree Level and Training(s) |
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| General Information | |
| Start Date | 01/06/2025 |
| Duration (Fixed-term contracts and secondments) | Renewable : ☐ YES ☐ NO |
| Working Hours |
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| Remote work | ☒ YES * ☐ NO
*According to current Inserm standards. |
| Application deadline | 15-06-2025 |
| Contact | recruitment@erdera.org |
| Inserm civil servants |
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| Non-Inserm civil servants |
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| Contractual employees |
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| For more information
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Deadline: 15 June 2025
