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This award is presented to a team of care professionals or of 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, social care, including the patient journey and everyday needs.

The winner is selected taking into consideration the following criteria:

• Recognised excellence to improve patients outcomes
• Multidisciplinary care team, including psychological support and social workers or a structured linkage to them
• Case manager 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 about 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 a young outstanding individual (30 years old or under) who is actively contributing to raise awareness of key issues to people living with a rare disease on a local, national or international level. The award recognises strong dedication and commitment to positively impact the community by educating a wider audience of decision makers, the public and/or the media.

 

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For an individual who has demonstrated remarkable leadership in the field of rare diseases at a European level. Awardees are individuals who advocate for rare diseases and positively impact the community by educating decision makers, the public and the media and/or affecting policy and legislation through effective advocacy at the local, national and/or international levels to achieve positive change.

 

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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 local, national and international level. The award commends a dedication towards 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 distinguished researcher whose career represents a unique blend of scientific excellence and support of the patient community.
The winner is selected taking into consideration the following criteria:
• The researcher’s work has significantly contributed to a scientific breakthrough in a specific rare disease
• 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 in rare diseases
• The researcher has demonstrated engaging with rare disease patients in his work, e.g. involvement of patients in study design, prioritisation of research topics and/or selection of patient-centred outcomes.
• The researcher raises awareness of a given disease or other non-product related projects within its community

 

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Up to two EURORDIS Volunteer Awards will be presented in 2021 to individuals who have made an outstanding contribution to EURORDIS and the rare disease community on a volunteer basis.

 

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

 

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This award is presented to a pioneering company using innovative methods to develop treatments for rare diseases.

 

The winner is selected taking into consideration the following criteria:

• The company is developing treatments that address unmet medical needs
• The company works in therapeutic areas where there is currently no treatment available and where the patient population is small
• The company’s treatments are based on new, promising research or technology
• The company builds partnerships with other stakeholders (i.e. academia/universities, entrepreneurs, clinicians) to explore research/therapies that could apply to rare diseases
• The company’s engagement with patients led to more relevant trial designs, or more adequate and safer treatments for patients
• The company’s business model enables the acceleration of advances in rare disease therapies
• The company facilitates access to its treatments for all rare disease patients.

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This award is presented to a company that demonstrates long-term commitment in their collaboration with rare disease patients and consults with patients in the early stages of development and clinical trial design.

 

The winner is selected taking into consideration the following criteria:

• The company collaborates with rare disease patients from the early stages of development and throughout the entire product life-cycle
• The company has signed the EURORDIS Charter or has established a CAB or any other form of patient advisory group
• The company can demonstrate how engaging with patients has led to improved endpoints, patient outcomes or dossiers for regulatory evaluation
• The company raises awareness of a given disease or other non-product related projects within its community
• The company ensures patient safety and transparency on pricing
• The company has a compassionate use/expanded access programme.

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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 taking into consideration the following criteria:

• The positive impact on the daily lives of patients and their carers
• The technology enables a quicker/more accurate diagnosis
• The technology helps to better identify or design the final benefits and outcomes for the patients
• The technology generates better data and enables the collection of real world evidence
• The technology helps to reach more patients, especially those who live in areas where there is no or little infrastructure for rare diseases

   

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• Visual and Audio Media Award
  For the creator or creative team of visual or audio media that have raised awareness of rare diseases and brought the needs of people living with a rare disease to a wider audience. This could be through photography, television, radio, film, painting, online content, or another medium.

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• Written Media Award
  For the author of a text, such as a newspaper or magazine article, book or blog, that has brought the needs of people living with a rare disease to a wider audience.

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For an individual who has demonstrated lifelong dedication to addressing the needs of people living with a rare disease. His/her commitment has had a positive impact on the rare disease community at large, with an influence on a European or international scale.
The winner is selected taking into consideration the following criteria:

• His/her collegiate approach to advancing the cause of all rare diseases
• His/her role in representing the patients’ voice on a national, European or international scale
• His/her influence on patient-centred rare disease health policy and legislation
• His/her leadership and drive for positive change in the field of rare diseases
• His/her involvement in national and European/international committees and advisory groups

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