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 selected by the EURORDIS Board of Directors, based on the criteria for each category (please see below).

Nominations have now closed for the Awards. Submissions for the Photo Award open on 6 December 2017.

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 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
Submissions for the Photo Award open on 6 December 2017. For more info, see section about the Photo Award below.
 

 

 
 

The EURORDIS Photo Award

The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease, exploring its many aspects and to share your story with the rare disease community. Open to all, last year saw nearly 400 people from 54 different countries around the world submitting a photo, with each reflecting the drive of people living with a rare disease.Submissions can be made via the EURORDIS Facebook page from 6 December 2017, submissions close on 31 January 2018. To see the many entries from previous years, visit our Instagram page for some creative inspiration.From all who enter, five finalists will be chosen by the award-winning photographer Marcus Bleasdale, with on-site and on-line voting determining the winner of the award on the night of the EURORDIS Black Pearl Awards. Prizes will be given to both the winner and runners-up.

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).

 

2017 – Awardees stories

Recipients of the 2017 EURORDIS Black Pearl Awards

See the list of previous Awardees (2012-2017).

Elizabeth Vroom

Elizabeth Vroom EURORDIS Volunteer Award
“Receiving an award is very special, but even more so because this comes from a community I treasure and consider as family.”
Read more

Elizabeth Vroom is mother to a son with Duchenne Muscular Dystrophy (DMD) and founded the Duchenne Parent Project in the Netherlands, of which she remains president to this day. In 2002, Elizabeth co-founded the United Parent Projects Muscular Dystrophy (UPPMD) through which she helped establish World Duchenne Awareness Day.“Receiving an award is very special, but even more so because this comes from a community I treasure and consider as family. I am very honoured to receive the Volunteer Award for 2017 as I know how many people like me work hard to change the lives and future of patients with rare diseases.”
Elizabeth Vroom
(Duchenne Muscular Dystrophy Video)

Aldo Soligno

Aldo Soligno
Media Award
“Boundaries for scientific research and solidarity (…) must not exist for rare disease patients.”
Read more

In October 2014, Aldo Soligno led the project ‘Rare Lives’, a powerful photographic storytelling tool that gives an insight into the daily lives of people living with a rare disease.

“Spending days and weeks with families and patients suffering from a rare disease has meant so much to me to see how opposites can meet and turn into one another: weakness into strength, sadness into joy, despair into determination. Seeing this happen simultaneously in 7 different European countries has confirmed to me that there are no boundaries for scientific research and solidarity and they must not exist for rare disease patients too. I really hope this will be the legacy of my project.”
Aldo Soligno

Lucia Monaco

Lucia Monaco
Scientific Award
“The results we have seen over the past few years could not have been achieved without a strong collaboration among all of the stakeholders.”
Read more

Lucia Monaco is Chief Scientific Officer at the Fondazione Telethon and has made a significant impact in the field of rare disease in Italy and abroad, in particular through her strong commitment to the IRDiRC initiative. Her personal enthusiasm, guidance and dedication inspires many scientists and clinicians to become involved in state-of-the-art research for rare diseases such as the development of gene therapies.

“I feel deeply honoured receiving this award, which I believe really recognizes the value of the organization which I have the fortune to work with, as well as the value and the extraordinary results of our scientists. The Fondazione Telethon is in Italy, it is a charity which is committed to fight rare genetic diseases and to do this we support excellent research, but our mission is to bring the results of this research to patients. The results we have seen over the past few years could not have been achieved without a strong collaboration among all of the stakeholders that are involved in this fight, but I also wish to thank the exceptional team work by all of my colleagues who equally deserve this award. And most of all I wish to acknowledge the role of patients and their families.”
Lucia Monaco

Anders Olauson

Anders Olauson
Lifetime Achievement Award
“Life is holistic, as should care and support be. Working together at the United Nations will make this possible.”
Read more

Anders Olauson has devoted the past 30 years of his life to the rare disease cause. In 1989 he founded the Ågrenska Centre, a national competence centre in Sweden which provides support for people affected by rare diseases. Elected president of the European Patients’ Forum from 2005 to 2015, Anders remains Honorary President of the organization, which works to represent the patient voice at an EU level.

“I think it’s fantastic that I just want to share it with so many people to have this award. It’s a recognition that all the work you have done, all the travels and all the things and energy you have put in, that it has given a result and that result has been so greatly appreciated. I am totally honoured.

“To people in leading positions in government, who give people like me their trust and who also dare to open up boxes and do it in a different way

“Having a rare disease affects all aspects of life; experiences from thousands of families worldwide tell the same story. All areas of life – healthcare, social services, schools, insurances and labour – must work together. Life is holistic, as should care and support be. Working together at the United Nations will make this possible.”
Anders Olauson

Frederique Ries

Frédérique Ries
Policy Maker Award
“Frédérique Ries, Member of the European Parliament since 1999, has been a pioneer in the implementation of patient-centric health policies that focus on Union-added value”
Read more

Frédérique Ries, Member of the European Parliament since 1999, has been a pioneer in the implementation of patient-centric health policies that focus on Union-added value, especially in the field of rare diseases. Her most recent work, a project proposal that promotes a continuous bottom-up research approach including patients, demonstrates Ries’ consistent dedication towards tackling rare diseases in the European Union

GSK

GSK – Accepted on behalf of Martin Andrews
Company Award
“This award goes to all the people who have the courage, determination and focus (…) to make a change for all people living with severe rare disease.”
Read more

Since 2010, GSK has designated rare diseases as one of its core therapeutic areas. In 2016, after years of collaboration with Fondazione Telethon and Ospedale San Raffaele, GSK brought to market an innovative gene therapy to treat patients with the rare disease adenosine deaminase severe combined immunodeficiency syndrome (ADA-SCID).

“It is a huge privilege and a great honour, as well as humbling to accept this award on behalf of GSK. These awards are not dedicated to the individuals who receive them but dedicated to the universal people who make it happen. Since coming into the rare disease universe, I have felt overwhelmed by the welcome that you get, that everyone has a single-minded goal which is all around patient treatment and patient outcome. You don’t have to look very far to be inspired in this world. This award goes to all the people who have the courage, determination and focus, and who put in all their energy to make a change for all people living with severe rare disease. And of course to all the patients and families who drive us each day.”
Martin Andrews

Dravet - Accepted on behalf of Julian Isla & Isabella Brambilla
Patient Organisation Award
“EURORDIS is like my family.”
Read more

The Dravet Syndrome European Federation was founded in 2014 by eight patient organisations in seven countries. They now work together to raise awareness and to fight the impact of Dravet Syndrome—also known as Severe Myoclonic Epilepsy of Infancy (SMEI)—on patients and their families.“It is extremely important to us to receive this recognition. Personally for me EURORDIS is like my family. I attended the summer school 3-4 years ago and I have learnt so much from all that EURORDIS is doing. We are a new federation that has developed over the past 3 years. We created this federation with the determination of working on new treatments for Dravet, working in three pillars: Removing the barriers for research such as developing a new animal model to help facilitate treatment and how new drugs can be tested for Dravet. Digital transformation for our patients and preparing important and the right data for our clinicians, researchers, physicians and patients. And lastly collaboration between different multi-stakeholder groups. These are the 3 pillars in which we base our work.”
Julian Isla