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

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

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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 better helps 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

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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?
• Is 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?

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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?

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This award is presented to a team of health care professionals or organisations that provide or support the provision of coordinated and holistic care, support and guidance to rare disease patients and their carers, involving patients as partners. Holistic care takes into account the 360º spectrum of health and social care, including the patient’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 patients outcomes
• A multidisciplinary care team, including psychological support and social workers or a structured linkage to them
• A multidisciplinary care team, including psychological support and social workers 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 empower patient autonomy.
• Integrated care plans / Health Plan / Life Plan targeting people living with rare diseases
• Lead clinician who has the overall responsibility to ensure the coordination of medical care
• Guidance to direct patients and their carers towards social services and education resources
• Collaboration with patient organisations and volunteers to provide information, guidance and support to patients and carers, involved as partners in the service or the direct care
  
  
  

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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. 

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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

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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 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 our 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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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.

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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 we value most. The award honours the best advocates on social media platforms such as Twitter, Facebook, YouTube, Instagram, and TikTok. 

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