The two half-day ARRIGE annual meeting will be exploring the pressing ethical, social, and policy issues surrounding access to and affordability of emerging gene therapies developed through genome editing technologies. The event will bring together researchers, clinicians, policy makers, regulators, biotech entrepreneurs, pharma and patient advocates to discuss equity, innovation, and global health implications.
URGENT ANNOUNCEMENT FROM ORGANIZERS: Thanks to the support of the University of Strasbourg, the in-person registration fee will be waived for students and postdocs. This applies only to on-site participation, not to online attendance.
FINAL Programme (meeting booklet)
Tuesday, October 28
13:00 – Welcome and Meeting Introduction
- Guillaume Pavlovic, PHENOMIN- IGBMC, Strasbourg; Board Member, ARRIGE
- Martina Crispo, Institut Pasteur De Montevideo, Uruguay; Chair, ARRIGE Scientific Committee
- Hervé Chneiweiss [online], INSERM, France, ARRIGE President
13:15 – Keynote: Alta Charo, University of Wisconsin, USA; Member, ARRIGE Scientific Committee: “Gene Therapy: Affordable? Accessible? Achievable?”
13:45 – Panel 1 – Technicalities
This panel will explore the scientific and regulatory specificities of the new generation of gene therapies – from ex vivo editing (e.g., CAR-T, CRISPR-based therapies) to in vivo delivery platforms. It will examine how choices in technology design, clinical translation, and intellectual property regimes affect costs, scalability, and downstream affordability.
Key Questions:
- What makes current gene therapies so expensive?
- How are advances in base editing, delivery systems, or manufacturing likely to influence future accessibility?
- Are there design choices that can “bake in” affordability from the start?
Moderator: Martina Crispo, Institut Pasteur De Montevideo, Uruguay; Chair, ARRIGE Scientific Committee
Speakers:
- Fyodor Urnov, UC Berkeley, USA [online], Benefit-risk Commensurate Design, Manufacture, Derisking, and Clinical Deployment of Personalized Gene Editing Therapies for Pediatric Inborn Errors of Immunity
- Kiran Musunuru, UPENN, USA [online], Developing and deploying personalized gene-editing therapies
- Marina Cavazzana, University of Paris Descartes, France, Gene therapy for sickle cell disease: where do we stand in the treatment for all? a textbook cas
Questions and answers session
15:15 – Break (coffee/tea)
15:45 – Panel 2 – Access/Affordability: Perspectives from Different Regions
This panel brings together diverse voices from the Global South and North to reflect on regional disparities in accessing gene therapies. It will discuss economic, regulatory, and infrastructural barriers – and highlight innovative models of equitable access.
Key Questions:
- What are the main obstacles to accessing gene therapies in different regions?
- How do health systems, reimbursement schemes, and regulatory pathways impact affordability?
- Are there promising regional or international approaches (e.g., licensing pools, public-private partnerships) that could be scaled up?
Moderator: Yann Hérault, CELPHEDIA, France
Speakers:
- Kazuto Kato, University of Osaka, Japan [online], Equitable access to new medical technologies – Viewpoints from Japan and Western Pacific
- Michael S Pepper, University of Pretoria, South Africa [online], Ensuring global access to advanced therapies
- Fabiana Arzuaga, University of Buenos Aires, Argentina, From Regulation to Equity: Governance and Access Challenges in Genomic Therapies in Latin America
Questions and answers session
17:30 – ARRIGE Association General Assembly – ARRIGE MEMBERS
18:00 – End of Day 1
Wednesday, October 29
09:00 – Welcome: Day One Reflection; Day Two Goals/Outcomes, Martina Crispo, Chair, ARRIGE Scientific Committee
09:05 – Panel 3 – Ethical and Policy Challenges: Access, Incentives, IP, Responsibilities
This panel will examine the tension between innovation incentives (e.g., patents, exclusivity) and health equity. It will also assess the role of public funding in therapeutic development and the expectations it creates for pricing and access.
Key Questions:
- Should the pricing of gene therapies reflect public contributions to their development?
- What ethical frameworks are most useful in guiding access policies for high-cost therapies?
- What responsibilities do industry, states, and scientific communities share in ensuring global equity?
Moderator: Fabiana Arzuaga, University of Buenos Aires, Argentina
Speakers:
- Julian März, University of Zürich, Switzerland, An Ethics Framework for Incentive Systems for Pharmaceutical R&D — The Case of Gene Therapies
- Pawel Lukow, University of Warsaw, Poland, Some ethical assumptions of pricing policies for high-cost therapies
- Paul Aliu, Novartis, Switzerland [online], Access vs. Innovation – an ethical conundrum
- Daima Bukini, Muhimbili University, Tanzania [online], Access to gene therapy in Africa, and why ethics matters
Questions and answers session
10:45 – Break (coffee/tea)
11:00 – Final Roundtable – Cross-Cutting Discussion
To close the meeting, all speakers and participants will gather for a facilitated roundtable to synthesize insights, identify converging challenges, and propose actionable steps for ARRIGE and its members. Suggested Core Questions:
- What mechanisms can ensure affordable access to gene therapies without stifling innovation?
- How can we harmonize international governance on safety, efficacy, and cost transparency?
- How do we better incorporate perspectives from low-resource settings in upstream decision-making?
- What are the most urgent next steps at policy, funding, or research levels?
- What role can ARRIGE play in promoting equity in access and affordability?
Moderator: Alta Charo, University of Wisconsin, USA
Open Discussion
12:30 – Meeting Summary / Next Steps / Closing Remarks
- Martina Crispo, ARRIGE Scientific Committee
- Hervé Chneiweiss, President, ARRIGE [online]
13:00 – End of ARRIGE annual Meeting
Confirmed Speakers
- Alta Charo, University of Wisconsin, USA
- Fabiana Arzuaga, University of Buenos Aires, Argentina
- Marina Cavazzana, University of Paris Descartes, France
- Kazuto Kato, University of Osaka, Japan [Online]
- Kiran Musunuru, UPENN, USA [online]
- Michael S Pepper, University of Pretoria, South Africa [online]
- Pawel Lukow, University of Warsaw, Poland
- Julian März, University of Zürich, Switzerland
- Fyodor Urnov, UC Berkeley, USA [online]
- Daima Bukini, Muhimbili University, Tanzania [online]
- Paul Aliu, Basel, Switzerland [online]
FINAL Programme (meeting booklet)
The City of Strasbourg
Strasbourg, the European capital and a jewel of Alsace listed by UNESCO, is known for its rich heritage, unique architecture, and art of living. It is the ideal city to promote accessible and affordable medicine. Easily accessible by high-speed train from Paris and several nearby airports. A travel discount for attendees is available for AIR FRANCE/ KLM flight on request.
Congress Location
Online (up to 1,000 attendees) and at IGBMC (130 attendees), located near Strasbourg.
The annual ARRIGE meeting will take place at the Institute of Genetics and Molecular and Cellular Biology (IGBMC) in Illkirch-Graffenstaden’s Innovation Park. The IGBMC is a renowned French research institute, recognized internationally for its excellence. It is dedicated to understanding the fundamental mechanisms of gene expression as well as those that govern the organization and fate of cells in both normal and pathological contexts. The IGBMC hosts approximately 800 researchers, technicians, and students.
REGISTRATION
Registration is mandatory through this link.
You will be asked to accept the GDPR terms of the Université de Strasbourg
The 2025 ARRIGE annual meeting (both on-site and virtual) is free for ARRIGE members.
There is a fee of 80 euros for non-members. Payments are accepted by credit card and PayPal through our ARRIGE PayPal account (treasurer@arrige.org). Bank wire transfers can also be accepted. Please contact: treasurer@arrige.org
URGENT ANNOUNCEMENT FROM ORGANIZERS: Thanks to the support of the University of Strasbourg, the in-person registration fee will be waived for students and postdocs. This applies only to on-site participation, not to online attendance.
Travel discount avilable via AIR FRANCE/KLM – use event code GME60051AF
Non-member participants are encouraged to register and become ARRIGE members and hence qualify for a free attendance to this 2025 ARRIGE Annual Meeting. For members of the University of Strasbourg, including students, participation will also be free (pending confirmation based on the outcome of a related grant application).
This meeting is sponsored by:
