Deadline: 31-Aug-23

Nominations are now open for the EURORDIS Black Pearl Awards to nominate your star of the rare disease community.

The 13 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.

Categories and Criteria

• 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
• 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.
• European Rare Disease Leadership Award
  • For an individual who has shown remarkable leadership in the field of rare diseases at a European level. Awardees advocate for rare diseases and beneficially impact the community by educating decision makers, the public, and the media and/or by affecting policy and legislation to achieve positive change through effective advocacy at the local, national and/or international levels.
• Policy Maker Award
  • For a policy maker whose dedication and commitment has made a significant difference to the rare disease community. The award recognises an outstanding individual who has demonstrated excellence in championing the rare disease cause at a local, national, and international level. The award commends a commitment to advancing the implementation of policies to improve the life of people with rare diseases, fostering funding programmes to support research and development, and raising awareness of key issues of relevance to the community.
• 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
• Volunteer Awards
  • Up to two EURORDIS Volunteer Awards will be presented in 2022 to individuals who have made an outstanding contribution to EURORDIS and the rare disease community on a voluntary basis.
• Members Award
  • For a EURORDIS member patient organisation demonstrating innovative methods in patient support or advocacy.
• Media Award
  • For an individual or group creating a media piece to raise awareness of rare diseases and bring the needs of people living with a rare disease to a wider audience. The award promotes excellence in journalism, photography, cinema, series, art, literature, and mass media.
• Social Media Award
  • Established in 2022, the Award is presented to an individual or organisation who have created innovative and meaningful social media content, advocating for people with rare diseases and bringing the reality of their daily lives into the public arena.
  • Communication, raising awareness, creativity and ability to reach people outside the rare disease community are the qualities they value most. The Award honours the best advocates on social media platforms such as Twitter, Facebook, YouTube, Instagram, and TikTok.
• 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.
• Company Award for Innovation
  • For a pioneering company using innovative methods to develop treatments for rare diseases.
  • The winner is selected on the basis of the following criteria:
    • Is the company developing treatments that address unmet medical needs?
    • Does the company work in therapeutic areas with small patient populations and in which there is currently no treatment available?
    • Are the company’s treatments based on new, promising research or technology?
    • Does the company build partnerships with other stakeholders (i.e. academia/universities, entrepreneurs, clinicians) to explore research/therapies that could be applied to rare diseases?
    • Has the company’s engagement with patients led to more relevant trial designs or safer and more adequate treatments?
    • Does the company’s business model enable the acceleration of advances in rare disease therapies?
    • Does the company facilitate access to its treatments for all rare disease patients?
• Company Award for Patient Engagement
  • For a company that demonstrates long-term commitment in its collaboration with rare disease patients, consulting with them in the early stages of development and clinical trial design.
  • The winner is selected on the basis of the following criteria:
    • Does the company collaborate with rare disease patients from the early stages of development and throughout the entire product life cycle?
    • Has the company signed the EURORDIS Charter on Research and Clinical Trials or established a CAB / any other form of patient led advisory group?
    • Can the company prove how patient engagement has led to improved endpoints, patient outcomes, or dossiers for regulatory evaluation?
    • Does the company raise awareness of a given disease or other non-product related projects within its community?
    • Does the company ensure patient safety and transparency on pricing?
    • Does the company have a compassionate use/expanded access programme?
• Company Award for Health Technology
  • For any company 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 a rare disease.
  • The winner is selected on the basis of the following criteria:
    • The positive impact on the daily lives of patients and their carers across disease areas
    • The extent to which the technology enables a quicker/more accurate diagnosis
    • The extent to which the technology helps better to identify or design the final outcomes for patients
    • The extent to which the technology generates more valuable data and enables the collection of real-world evidence
    • 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

Eligibility Criteria

• Nominations can be submitted from anywhere in the world.

Detail

• Among all the nominations received, the EURORDIS Board of Directors will select the awardees in October 2023. 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 2024, to mark the occasion of Rare Disease Day.

For more information, visit EURORDIS-Rare Diseases Europe.