Lifetime Achievement Award

For an individual who has manifested a lifelong dedication to addressing the needs of people living with a rare disease. Their commitment has had a positive impact on the rare disease community at large, wielding influence on a European or international scale.

The winner is selected on the basis of the following criteria:

  • Their collaborative approach to advancing the cause of all rare diseases
  • Their role in representing patient voices on a national, European, or international scale
  • Their influence on patient-centred rare disease health policy and legislation
  • Their leadership and drive for positive change in the field of rare diseases
  • Their involvement in national and European/international committees and advisory groups

Previous Awardees

2022 Awardee: Dr William Gahl

The EURORDIS Lifetime Achievement recognises the lifelong dedication Dr. Gahl has shown in addressing the needs of people living with a rare and undiagnosed disease. With this award, we would like to acknowledge the key role he has played in the creation of the Undiagnosed Diseases Network (UDN) within the National Institutes of Health, a programme that has played an essential role in discovering many new genetic disorders.

The award also recognises the leadership role he played in the development of the International Network on Undiagnosed Diseases (UDNI) .


2021 Awardee: Milan Macek


The EURORDIS Lifetime Achievement Award recognises Milan Macek's lifelong dedication shown in addressing the needs of people living with a rare disease in the Czech Republic and in Europe. It acknowledges his commitment to rare diseases within EUCERD, the European Society of Human Genetics, the CF Network, Orphanet, and more.

The award also recognises Milan's lasting support to EURORDIS activities, notably the ECRDs and the Rare 2030 Foresight Project.


2019 Awardee: Michael Griffith


The EURORDIS Lifetime Achievement Award recognises Michael Griffith's exceptional work and vast achievements as a leader and driver for change in the field of rare diseases as co-founder of Fighting Blindness. The ripple effect of Michael’s impact has been phenomenal, with his passion, drive and energy continuing to inspire others.

The award also recognises Michael's leadership in raising funds for Fighting Blindness and under his leadership, the commission of genetic scientists in Trinity College Dublin to start a project investigating the cause of retinitis pigmentosa (RP).

2018 Awardee: Alastair Kent

The EURORDIS Lifetime Achievement Award recognises Alastair Kent's vast achievements as a central figure in the UK, Europe and worldwide having influenced and advised patient organisations, the
charitable sector and indeed government through the Department of Health. He is an expert in his field who has changed the face of genetic research in his long and dedicated career, providing patient support for children, adults and families living with different forms of genetic disorders. Campaigns led by Alastair have significantly influenced legislation to the benefit of patients and have received the gratitude of lawmakers.

He has been recognised by his country for his numerous services to healthcare with an OBE, and thus we hope that this Lifetime Achievement Award from EURORDIS is a fitting recognition from fellow representatives and practitioners of the rare disease community.


2017 Awardee: Anders Olauson


The EURORDIS Lifetime Achievement Award recognises Anders Olauson's outstanding work and devotion to the rare disease cause, notably rare conditions affecting the lives of children and their families. Taking action to provide a platform for people living with a rare disease, Anders helped found the Ågrenska Centre in 1989,where he continues to serve as Chairman. Anders brought his enthusiasm and experience to his role as the President of EURORDIS-Rare Diseases Europe in 2000, as well as adherence as a member of the EURORDIS Board of Directors from 1999 to 2010, making a profound impact on the organisation.

Anders’ vision and goals for the rare disease community are reflective of his long-term dedication to rare diseases. EURORDIS is delighted to award Anders this award as it serves to honour all that Anders has done for the rare disease community.


2016 Awardee: Renza Barbon


The EURORDIS Lifetime Achievement Award recognises Renza Galluppi's strength and ability to be where she is needed at the right moment, even though it means attending conferences, meetings and workshops in three different cities in two days. As President of UNIAMO, Renza has contributed to stressing the importance for patients with Rare Diseases to share their experiences within associations and promote their integration into the community in every facet of life. In particular, she has advocated for patient representatives to be part of the expertise and decision making process, and has committed to the social innovation project, ‘Ristoro Fantasia’, overcoming mental and social barriers within young patients affected by rare diseases.

The award recognises her vision of a rare disease community, translated into a project, which brought for the first time, all the national key stakeholders, including patients’ representatives, around the same table to share perspectives and objectives to improve the quality of care in order to overcome the inequalities linked to the regionalised health system.

2015 Awardee: Abbey Meyers


The EURORDIS Lifetime Achievement Award recognises Abbey Meyers's vast achievements as a leader and driver for change using her experience of parenting a child with Tourette syndrome, leading her to realise that patients with rare diseases were being neglected,  to found the National Organization for Rare Disorders (NORD) in the USA. NORD is an incredible organisation dedicated to helping people with rare diseases and to the identification, treatment and cure of rare diseases through education, advocacy, research and service. Indeed, NORD was the precursor and inspiration for the creation of EURORDIS.

This Lifetime Achievement Award serves to honour all that Ms Meyers has done for the rare disease community in the USA and throughout the world, her personal and tireless dedication to the cause and her instrumental role in the passage of landmark policies such as the Orphan Drug Act of 1983.



EURORDIS Black Pearl Awards highlights