Awards categories

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.

Find out more about the 2018 Awardees.

The EURORDIS Photo Award

View the EURORDIS Photo Award winners!

The EURORDIS Photo Award 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 EURORDIS Photo Award is one of the 13 EURORDIS Black Pearl Awards presented in recognition of the outstanding achievements and exceptional work of people making a difference for the rare disease community. Last year 400 people from 54 different countries around the world submitting a photo, with each reflecting the different aspects of living with a rare disease.
World-renowned National Geographic photojournalist Marcus Bleasdale (see below for more information) will then select a shortlist of 5 photos that will be opened to a public vote. Online voting for the five finalists will open on 13 February and will close on 20 February at the EURORDIS Black Pearl Awards Ceremony. The winner of the EURORDIS Photo Award 2018 will be announced live, the three finalists with the most votes will each receive a prize.Be part of the action on the night – find out who wins the EURORDIS Photo Award and 12 other Black Pearl Awards on the evening of 20 February by watching a livestream of the Awards Ceremony.
Marcus Bleasdale – member of the EURORDIS Black Pearl Awards Selection Committee

Marcus Bleasdale is a talented documentary photographer and photojournalist who has been dedicated to advocacy and human rights for over fifteen years. His work on human rights and conflict during his role as a photographer for National Geographic Magazine has helped to educate and advise corporations and policy makers around the world. Marcus has also partnered with various international advocacy groups, including the Human Rights Watch.

In 2002, his first book “One Hundred Years of Darkness” was published, soon followed by “The Rape of a Nation” (2009) and “The Unravelling” (2015). Appearing in the New Yorker, The New York Times, The Sunday Times Magazine and TIME Magazine to name a few, he has been the recipient of numerous prestigious awards including the UNICEF Photographer of the Year Award (2004), the Anthropographia Award for Photography and Human Rights (2010), the Amnesty International Award (2015) and the Robert Capa Award (2015).


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 Patient Organisation Award
For a EURORDIS member patient organisation demonstrating innovative methods in patient support or advocacy.
Company Awards

The EURORDIS Company Award for Innovation and the EURORDIS Company Award for Patient Engagement. Two separate awards – one for a pioneering company developing treatments for rare diseases, the other for their collaboration with rare disease patients.

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.


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. To take part, submit your photo before 31 January 2018