The Voice of Rare Disease
Patients in Europe
Take part in multi-stakeholder debate on access to therapies
Improving patients’ access to rare disease therapies has long been a priority for EURORDIS and its member organisations throughout Europe.
In February 2016, the first in a series of symposia took place to discuss this crucial topic. A unique combination of nearly 300 patient advocates, academics, policymakers, industry representatives, payers and health technology assessment (HTA) bodies came together to discuss the current state of play and how to shape a more effective way to improve patients’ access.
The symposium addressed a crucial bottleneck in making rare disease therapies accessible across Europe; new medicines are being developed, but scientific innovation cannot be disconnected from access to medicines. If an innovative medicine is approved but does not reach patients because of pricing or reimbursement considerations, it fails in its primary objective. Read the conclusions document of the February 2016 symposium to learn more about the perspectives of the various stakeholder groups that participated.
Register for the next symposium!
The second symposium in this series will take place on 22 – 23 February 2017 in Brussels.
Take part in truly multi-stakeholder discussions with representatives from patient organisations, industry, academic and research institutions, as well as policymakers, payers and representatives from HTA authorities. All participants will be encouraged to speak openly about the issues that concern them.
See below for details of how to register for the symposium depending on your profile:
- All patient representatives will have their fee waived for this event. If you are a patient representative, you can also apply for a limited number of EURORDIS fellowships to cover the cost of your travel and hotel for your attendance to the event. To apply please email firstname.lastname@example.org.
- If you are from the pharmaceutical industry, a consultant, investor, academic, healthcare professional or researcher please register via this page.
- If you are from a payer body, HTA agency, national competent authority, regulator or a government worker, please contact email@example.com to request a different registration form.
This event will take the debate to the next level. Following on from the issues discussed at the first symposium, participants will come together to consider sustainable, decisive and long-lasting solutions to improve patients’ access to rare disease therapies.
The goal of this second symposium is to build and seek convergences on the current and emerging models and initiatives and to develop a process inclusive of all stakeholders to work towards solutions to improve access.
EURORDIS’ actions on access
The event forms part of EURORDIS’ wider advocacy efforts on access:
- In May 2015, EURORDIS and the European Patients' Forum (EPF) launched a call on the national authorities to collaborate on medicines pricing and access schemes at a European level.
- In May 2016, EURORDIS and EPF wrote to national authorities in Belgium, the Netherlands and Luxembourg to call upon them to extend their agreement for joint negotiation of orphan medicines pricing to other Member States.
Ahead of the second symposium, EURORDIS will publish a milestone position paper on how to structure a new model that better meets the needs of rare disease patients, sustains greater access to orphan medicines and that also helps to restore transparency and trust between payers and pharmaceutical companies.
Eva Bearryman, Communications Manager, EURORDIS