Nominations for the EURORDIS Black Pearl Awards 2019 are open until 20 August 2018. The EURORDIS Black Pearl Awards are held in celebration of Rare Disease Day. Rare Disease Day 2019 is on 28 February.

Who can be nominated?

Awards are presented to patient advocates, organisations, policy makers, scientists, companies and media for their major achievements and their outstanding commitment to the rare disease cause. Nominations are submitted by the general public and shortlisted by a nominations committee. The winners are then selected by the EURORDIS Board of Directors.

How to submit a nomination?

Anyone, from anywhere in the world, can nominate an individual or organisation for any of the award categories via the nomination form below.

Find out more about the 2018 Awardees

Awards categories & criteria

Young Patient Advocate Award
For a young person of 26 years or under who has worked to bring awareness of the needs of people living with a rare disease to a wider audience.
European Rare Disease Leadership Award
For an individual who has demonstrated remarkable leadership in the field of rare diseases at a European level.
Policy Maker Award
For a policy maker whose dedication and commitment to rare diseases has made a significant difference to the rare disease community.
Scientific Award
For a distinguished researcher whose career represents a unique blend of scientific excellence and support of the patient community.
EURORDIS Volunteer Awards
Two EURORDIS Volunteer Awards will be presented in 2018 to individuals who have made an outstanding contribution to EURORDIS and the rare disease community on a volunteer basis.
EURORDIS Members Award
For a EURORDIS member patient organisation demonstrating innovative methods in patient support or advocacy.
Company Award for Innovation

The EURORDIS Company Award for Innovation is presented to a pioneering company developing treatments for rare diseases.

The winner is selected using the following criteria:

    • The treatments that the company is developing;
    • The number of treatments that have been approved;
    • The company’s policy and track record on access to drugs;
    • The company’s policy and track record with patient organisations; and
    • The company’s partnership with EURORDIS.
Company Award for Patient Engagement
The EURORDIS Company Award is presented to companies which demonstrate long-term commitment in their collaboration with rare disease patients.
Company Award for Health Technology
A new Award category – for any company working in technology or the development of medical devices, IT platforms, health apps or diagnostic tools, aiming to improve the lives of people living with a rare disease.
International Media Awards
  • Visual and Audio Media Award

For the creator or creative team of visual or audio media that have raised awareness of rare diseases. This could be through photography, television, radio, film, painting, online content, or another medium.

  • Written Media Award

For the author of a text, such as a newspaper or magazine article, book or blog, that has brought the needs of people living with a rare disease to a wider audience.

Lifetime Achievement Award

For an individual whose lifelong dedication and commitment to addressing the needs of people living with a rare disease has had a positive impact on the rare disease community. 

Photo Award
The EURORDIS Photo Award is open to anyone with a connection to the rare disease cause. It is an opportunity to visually express the reality of living with a rare disease on a daily basis and to share your rare disease story. The submission process will open on 1 November 2018

Nomination form

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