EURORDIS Round Table of Companies: Purpose and Aims

General Purpose

The EURORDIS Round Table of Companies was created to establish a long-term educational relationship between EURORDIS and those companies having an interest in orphan drugs, treatments, medical devices, food supplements and health services for people living with rare diseases. This relationship is driven by the Principles stated in the Round Table’s Code of Conduct and according to EURORDIS’ Policy on Financial Support by Commercial Companies.

Specific Aims

To provide EURORDIS with pooled financial support for unrestricted funding with no strings attached, in favour of activities of common interest and benefit, such as:

  • Improving access to information, treatment, care, services and support for people living with rare disease across Europe.
  • Raising public awareness of orphan drugs, rare diseases, and of the need for more research.
  • Empowering rare disease patient groups and their advocacy capacity (through information, training and networking).
  • Improving identification and knowledge of rare disease patient groups at the European level; facilitating networking and reaching out to them.

 

To educate concerned companies on the common goal of facilitating rapid development and availability of treatments and services for people affected by rare diseases.

To network with leaders of the orphan disease community, patient groups, voluntary health organisations, regulatory agencies and policy makers and promote open and frank sharing of information, in a neutral forum, on the process, obstacles and incentives for the development of treatments.

To stimulate orphan drug companies to address patient’s needs and to encourage other companies not yet involved in this field to develop treatments for rare diseases.

To offer a venue to educate companies on working with patient groups and help them build partnerships and collaborations with the patient community and academics.

To make exchange of views between leaders of the patient organisations and industry possible, in order to provide insights as to why, when, and how to work with patients.

Membership

Companies interested in the challenging field of rare disease are invited to become members of the EURORDIS Round Table of Companies.

A pledge of financial support for EURORDIS’ actions earns a company membership status as a Ruby member (25,000 €), an Emerald member (10,000 €), a Sapphire member (5,000€) or an Associate member (2,000€).

Current members of the Round Table

The Round Table offers its members a unique opportunity to interact in a neutral environment with other companies, with leaders of the rare disease community, and also with national and European health authorities. Workshops enhance relationships between industry and patient groups. Discussions focus on helping companies to speed development and availability of treatments and services in Europe.

Consider joining the Round Table

Page created: 19/08/2009
Page last updated: 22/08/2014
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases