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Rare disease uk survey
The aim of disease the study is to investigate how care of people with rare diseases is coordinated in the UK, and importantly, how patients and families affected by rare diseases, and the healthcare professionals who treat them, would like care to be e detailed rare objectives.
We will be releasing another survey at a later date, where you will be given the opportunity to expand upon your views.
You may find yourself choosing between two non-ideal scenarios, this is so that we can understand what your priorities are.
Genetic Alliance crack UK are working on a policy project to improve access to medicines for rare diseases.
To work closely with patients and families throughout the project and disseminate findings widely.
To do this, disease we are launching a survey to capture your preferences about the decision-making process.
The findings of disease the focus groups will inform the development of a survey which will be sent to patients, carers and health care professionals later in the study.
Genetic Alliance UK are part of a wider team of academics and experts in rare diseases addressing this gap through a new research study, COordiNated Care Of Rare Diseases (concord).To calculate the costs of the types of coordinated care identified in the taxonomy.Out of these cookies, the cookies that are categorized as necessary are stored cooler on your browser as they are as essential for the working of basic functionalities of the website.To inform this project, we are launching a survey to find out the views of patients, carers, patient organisations and industry members on access to medicines for rare diseases.Project, we are looking at the decision-making process which determines whether licensed products are reimbursed and made accessible through the NHS.If you are an industry member and produce a medicine to treat a rare or genetic condition, please select this survey.To analyse preferences for different types of coordination by patients and families, and health care professionals.But opting out of some of these cookies may have an effect on your browsing experience.Read the full advert for patients and carers here.This project is called Resetting the Model.In order for us to design a new method of access to suit your needs, revenge it is vital that you answer the survey at face value.Cookie Use and, data Transfer outside the.
For any more information about the survey or rare disease uk survey the Resetting the Model project, please contact email protected.
National campaign run by to improve the lives of those affected by rare diseases and all who support them.