This will be the first survey of it kind concerning CADASIL Disabilities and its consequences with functioning and daily life.
Orphanet, the European portal, and worldwide reference database for rare diseases and orphan drugs along with collaboration from CADASIL Together We Have Hope Non-Profit Organization, wish to invite CADASIL patients or their families to participate in the description of disabilities related to CADASIL survey/questionnaire.
As part of the first French national program for rare disabilities, Orphanet is indexing rare diseases with the terms of the International Classification of Functioning Disability and Health. Orphanet is working with the French Solidarity Fund for Autonomy (CNSA) to document the functional consequences of rare diseases and disabilities with CADASIL.
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 survey will take less than 30 minutes.
I f 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.
Click on this link for further instructions and to start this important questionnaire/survey. http://myemail.constantcontact.com/Your-Participation-IS-NEEDED---CADASIL-Disability-Project----Deadline-August-15--2013---.html?soid=1108369064776&aid=RdXD50BvflY