It's nominations time again!
Nominations can be submitted from anywhere in the world!
Categories and criteria
Learn more about the award categories and nomination criteria by clicking on the titles below.
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
In collaboration with Orphanet (https://www.orpha.net/)
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
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.
Communication, raising awareness, creativity and ability to reach people outside the rare disease community are the qualities we value most. The Award honours the best advocates on social media platforms such as Twitter, Facebook, YouTube, Instagram, and TikTok.
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?
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 or established a CAB / any other form of patient 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?
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
- 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