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Black Pearl Awards – Awardees

EURORDIS – Rare Diseases Europe wishes to recognise the major achievements and outstanding commitment of patient advocates, patient organisations, policymakers, scientists, companies, and members of the media who strive to make a difference for the rare disease community.

We would like to thank everyone for the hundreds of quality nominations we received! Although we would love to be able to award all of the stars of the community, we must limit the number of awardees each year to 11 categories, appointed by the EURORDIS Board of Directors.

Our 2024 Black Pearl Awardees will be announced on this page every week leading up to the ceremony. Stay tuned! 

Download the full list of Award Recipients (2012-2023)
Learn more about the Award Categories.

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RareResourceNet – European Network of Resource Centres for Rare DiseasesAward name: Holistic Care AwardYear of the award: 2024

RareResourceNet was founded, in 2018, to establish a European network of rare disease resource centres. Its mission is to advance holistic, high-quality care and services for people living with rare diseases across Europe.

RareResourceNet’s vision of holistic care is one that addresses the multidimensional health, psychosocial, educational, and daily life needs and wishes of people with a rare disease and their family members. The resource centres who are members of the network are leaders in promoting a person-centred and multidisciplinary approach to care and support.

The EURORDIS Holistic Care Award recognizes this vital role RareResourceNet and its member resource centres play in accelerating the implementation of holistic care across Europe. Their commitment to ensuring that people living with rare diseases and their families attain the highest standard of health and wellbeing, and gain equal opportunities, rights, and full participation in society is truly commendable.

With this award, we want to praise the longstanding achievements of its member resource centres in elevating care standards and in empowering service providers, professionals, people  with rare diseases, and their families. Furthermore, we want to recognize and support their vision and mission as a network.

We believe that RareResourceNet can greatly contribute to creating positive change and be a strong advocate, working alongside our members and others in the rare disease community, to support the development of policies and services which truly support people with rare diseases and their families to live their best and fullest lives.