Rare Diseases International Alliance of Companies for Patient-Centred Action (RDI Alliance of Companies)

The RDI Alliance of Companies is being established in 2019 to foster a long-term educational relationship between RDI and companies with products or services that have an impact on people living with a rare disease. This relationship is driven by the principles stated in the RDI Policy on Relationship with and Financial Support by Companies and in the RDI Alliance of Companies Code of Conduct, signed by every company joining the group.

The RDI Alliance of Companies is a platform for companies to support the rare disease cause internationally and to increase mutual understanding of issues that are important for rare disease patients and different industries.   This Alliance aims to:

  1. Build an international, cross-sector network of companies working in areas that affect rare disease patients.
    Leading companies from the following fields are in particular invited to join the network: pharmaceutical and biotechnology, medical equipment and devices, contract research, information technology, data mining and management, artificial intelligence, transport and logistics.
  2. Exchange perspectives on issues vital to various industries and to rare disease patients, as reflected in RDI’s advocacy agenda. Examples of issues covered include: access to care and treatments, data management and health care interoperability.
  3. Stimulate companies across many industries to address patient needs.
  4. Provide RDI with pooled financial support for unrestricted funding to advance RDI’s mission.

Companies joining the RDI Alliance of Companies make an annual contribution to be used at the discretion of RDI. Companies send at least one delegate to participate in:

  • The RDI Annual Meeting (with exception of the Annual General Assembly)
  • Two annual virtual meetings or webinars to gain input from corporate stakeholders of the rare disease cause
  • RDI Policy events as they arise and as the Company is able

To ensure transparency, companies in the RDI Alliance of Companies are recognized on the RDI website, Annual Activity and Financial Reports.

Download RDI Alliance of Companies Code of Conduct

Download RDI Policy on Relationship with and Financial Support by Companies