The Genetic and Rare Disease Network

The Genetic and Rare Disease Network (GaRDN) is seeking to establish a register of health professionals and researchers who have knowledge and experience in treating a particular rare or genetic disease, or set of conditions associated with a rare or genetic disease. Your support is appreciated and will assist in increasing awareness and access to rare and genetic disease identification and treatment.

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* 1. Name of Health Professional/Researcher

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* 2.
Contact Details
(only provide contact details you are happy to have displayed on the publicly accessible website OR select a or b below to restrict contact details to health professionals/researchers)**

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* 3. Rare and genetic diseases - areas of special interest
** We are sourcing and linking articles/online information on respondent's special interests. If you have information we can link to, please insert under additional information and clarify which special interest it applies to.

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* 4. Researchers - please provide information on the research you are conducting relating to your areas of special interest.
** If you have a link to your research, can you please insert under additional information.

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* 5. Patient Services - Do you belong to an organisation that has a multidisciplinary clinic or service for a rare and/or genetic disease? If yes, please provide details

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* 6. Are you available for telehealth consults?

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* 7. Do you provide transitional planning and care for patients from paediatric to adult health care services?

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* 8. Linking & Supporting Health Professionals and Researchers

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* 10. If there is any additional information you would like to include that relates to increasing awareness of rare and genetic disease and access to support and treatment, please insert it here.

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* 11. Where did you hear about this survey?

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