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Nominate Now!

Don’t miss your chance to nominate your star of the rare disease community, or enter yourself, for the 2025 EURORDIS Black Pearl Awards!

These award categories recognise the outstanding efforts of individuals, organisations, companies, researchers, scientists, media, and policy makers in bringing about change to improve the lives of the 30 million people in Europe and 300 million worldwide living with a rare disease.

Among all the nominations received, the EURORDIS Board of Directors will select the award recipients in October 2024.

A few finalists will be selected for the Social Media Award, for which the winners will be determined by a public vote. The awardees will then be presented with their awards at the official Ceremony in February 2025, to mark the occasion of Rare Disease Day.

Learn more about the award categories below and click to make your nomination in just a few minutes.

Learn more about the award categories and nomination criteria by clicking on the titles below.

Award Categories

  • EURORDIS Volunteer Awards

    In 2024! Up to two EURORDIS Volunteer Awards will be presented in 2022 to individuals who have made an outstanding contribution to EURORDIS-Rare Diseases Europe and the rare disease community on a voluntary basis.

  • EURORDIS Members Award

    For a EURORDIS member patient organisation demonstrating innovative methods in patient support or advocacy.

  • Policy and Leadership Award

    For a policy maker or leader whose dedication and commitment has made a significant difference to the rare disease community. The award recognises an outstanding individual who has demonstrated remarkable leadership in the field of rare diseases at a local, national, and international level. The award commends a commitment to advocating for rare diseases and beneficially impacting the community by educating decision makers, the public, and the media, and/or by advancing the implementation of policies to improve the lives of people with rare diseases.

  • Scientific Award

    For a distinguished researcher whose career represents a rare combination of scientific excellence and support for the patient community.

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

    • Whether the researcher has initiated and nurtured international/European collaboration(s) leading to a significant improvement in the understanding of the pathogenic mechanisms or therapeutic development of rare diseases
    • Whether the researcher has engaged with rare disease patients in their work, e.g. through the involvement of patients in study design, prioritisation of research topics, and/or selection of patient-centred outcomes
    • Whether the researcher’s work has significantly contributed to a scientific breakthrough in a specific rare disease
    • Whether the researcher raises awareness of a given disease or other non-product related projects within the community

    This Award is organised in collaboration with Orphanet.

  • Young Patient Advocate Award

    For a young, outstanding individual (aged 30 or under) who actively contributes to raising awareness of key issues for people living with a rare disease at a local, national, or international level. The award recognises dedication and commitment to positively impacting the community by educating a wider audience consisting of decision makers, the public, and/or the media.

  • Holistic Care Award

    This award is presented to a team of professionals or organisations that provide or support the provision of coordinated and holistic care, support and guidance to people living with a rare disease and their family members involving people as partners. Holistic care takes into account the 360º spectrum of health and social care and support, including the person’s ongoing journey living with a rare disease, and their everyday needs.

    The winner is selected taking into consideration the following criteria:

    • Recognised excellence to improve outcomes, quality of life and wellbeing of people living with a rare disease and their families.
    • A multidisciplinary care team, including mental health support and social support, or a structured linkage to them.
    • Use of dedicated case managers to coordinate care with the different specialists, follow up with care providers in the community, follow-up with social services and therapeutic education or other activities to support independent living.
    • Integrated care plans for people living with a rare disease, designed with a holistic, person-centred and life long approach approach.
    • Team/care unit leader who has the overall responsibility to ensure the coordination of care.
    • Guidance to direct people living with a rare disease and their families to social services and education resources.
    • Collaboration with patient organisations and volunteers to provide information, guidance and support to people living with a rare disease and their families, involved as partners in the service or the direct care.
  • Social Media Award

    For an individual or organisation leveraging social media platforms (e.g. Twitter, Facebook, YouTube, Instagram, and TikTok) to create innovative, impactful, and meaningful content advocating for the rare disease community. This award seeks to recognise social media advocates and influencers who have made significant contributions to bringing the challenges and stories of people with rare diseases to the forefront of public consciousness, extending their reach beyond the rare disease community itself.

  • Media/Raising Awareness Award

    For an individual or group raising awareness of rare diseases through a broad spectrum of channels, including journalism, photography, cinema, series, art, literature, and innovative digital campaigns, excluding direct social media activities. The award recognises excellence and innovation in using traditional and digital landscapes – such as blogs, podcasts, online video series, public relations and events, educational initiatives, and the use of interactive digital tools – to inform, educate, and mobilise the public.

  • Company Award for Patient Engagement

    For any company (whether startup, well-established or international) working in the field of technology developing medical devices, IT platforms, health apps, or diagnostic tools aiming to improve the lives of people living with rare disease. Any stages of product development will be considered, including early-stage innovations.

    Patients or patient representatives may also nominate a company which they believe meets most of these criteria.

    The following criteria will be considered during the nominations reviewing process. These criteria are guidelines for your submission and not an exhaustive list.

    • The positive impact on the daily lives of patients and their carers.
    • The potential of the technology to help address multiple needs and disease areas
    • The potential of the technology to be scaled up
    • The extent to which the technology captures data on the impact of the disease and enables the collection of real-world evidence to improve treatment outcomes.
    • For early stage innovations, to what extent is the technology pioneering in its approach?
    • The extent to which the technology ensures that data is collected from medically validated sources
    • Is there published literature that validates the technology
    • How does the technology ensure that patient data is protected and can be accessed
    • The extent to which the technology allows more patients to be reached, especially those who live in areas where there is little to no infrastructure for rare diseases
  • Company Award for Health Technology

    For a company that demonstrates long-term and constructive commitment in its collaboration with rare disease patients, meaningfully consulting with them at all stages of medicines development as equal partners.

    Patients or patient representatives may also nominate a company which they believe meets most of these criteria.

    The following criteria will be considered during the nominations reviewing process. These criteria are guidelines for your submission and not an exhaustive list.

    • In what key decision-making activities does the company engage patients across research and development?
    • How effective are the company’s efforts to enhance internal awareness, capability and planning in its approach to patient engagement?
    • Has the company consistently demonstrated meaningful patient engagement? Are there clear examples of impact– for instance improved endpoints,  patient reported outcomes and experiences being considered by decision makers?
    • How does the company engage with the patient community to raise awareness of a given disease and encourage capacity-building ?
    • Has the company signed the EURORDIS Charter on Research and Clinical Trials or established a Community Advisory Board / any other form of patient led advisory group?

    This Award is organised in collaboration with MedTech Europe.

Do not hesitate to contact us if you have any questions regarding the nomination process

Martina Bergna,
EURORDIS Events Manager



Martina-Bergna