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Up to two EURORDIS Volunteer Awards will be presented in 2026 to individuals who have made an outstanding contribution to EURORDIS and the rare disease community on a voluntary basis.

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

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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.

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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

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For a young, outstanding individual (of age 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.

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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.

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For an individual or organisation leveraging social media platforms (e.g. X, 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.

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For an individual, organisation, or group that has significantly raised awareness of rare diseases through a creative media or artistic project, or through a time-limited awareness campaign. This award recognises innovative and impactful use of storytelling, journalism, photography, cinema, art, literature, or digital media – including blogs, podcasts, video series, public engagement events, or interactive experiences – to inform, inspire, and mobilise the public. Rather than an organisation's general awareness-raising activities, nominations for this award should relate to a specific project or campaign.

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This award is presented to 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.

We encourage patients or patient representatives to nominate a company which they believe meets most of these criteria. A company may also nominate themselves.

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 helped facilitating the creation of patient communities and networks? If so, has this led to fruitful collaborative initiatives between patient groups and with other stakeholders?

Please answer as many of the following questions as you can to give us a complete overview of why this company deserves to be considered for this award. 

Nominee information

This award is presented to 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.

We encourage patients or patient representatives to nominate a company which they believe meets most of these criteria. A company may also nominate themselves.

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

Please answer as many of the following questions as you can to give us a complete overview of why this company deserves to be considered for this award. 

Nominee information

Take a moment to look at past awardees from previous editions of the EURORDIS Black Pearl Awards here!

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