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You're invited to complete:
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| First-Ever
Disabilities with
CADASIL Project
(Questionnaire/Survey)
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Orphanet, the European portal and worldwide reference database for rare diseases and orphan drugs, in collaboration with CADASIL Together We Have Hope Non-Profit Organization, invites CADASIL patients and/or their families to participate in this groundbreaking project. It is of benefit to us all to have a quantitative, fact-based measurement of the impact of CADASIL on daily functions and a clear description of disabilities related to CADASIL.
As part of the first French national program for rare disabilities, Orphanet is working with the French Solidarity Fund for Autonomy to document the functional consequences of rare diseases and disabilities and will be indexing rare diseases with the terms of the International Classification of Functioning Disability and Health.
This important data will allow health professionals, patients and their families, care and support facilities to learn about the impact of CADASIL on patient's daily life worldwide.
The Orphanet team and CADASIL Together We Have Hope thank you in advance for your active participation. Orphanet also wishes to thank you in the enhancement of their open-access European portal for information on rare diseases and orphan drugs, which is visited by 20,000 people per day.
The project will take less than 30 minutes and please complete as soon as you can.
If you have a family member or know someone else with CADASIL, please forward this e-mail to them. The more participants the better the data will be.
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Deadline
Thurs, August 15, 2013
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