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The Genetic Alliance is conducting a survey of those with genetic conditions, as a member of the Genetic Alliance it will help us all to have this information. PLEASE take the 5 minutes required to complete the survey on the link below!
Here is the letter for the Genetic Alliance.
Dear all,
As many of you recall, we have been conducting a survey - asking consumers, patients, about their experiences with their health care providers.
http://www.nchpeg.org/SFGC_Survey/Survey.asp
Some of you have reached many of your members, and so for some even rare diseases we have hundreds of entries - Bravo! Now we need you to send this far and wide...
We've extended the survey so that we can be sure to capture a more representative sample. Please encourage your members to answer this survey. We will keep it open until we have sufficient numbers of answers from common diseases, and broader representation from rare disease communities and underserved communities. So please send this URL out to your members - asking them to answer the questions today! It will only take them five minutes. You will be receiving both the raw data for your condition, as well as the completed reports. This data will be useful to you as you work to understand what the clinicians who treat your members know and don't know. You will also come to understand how your members learn best. But you will need more than 6 or 7 answers to make this useful!
Here is the letter for the Genetic Alliance.
Dear all,
As many of you recall, we have been conducting a survey - asking consumers, patients, about their experiences with their health care providers.
http://www.nchpeg.org/SFGC_Survey/Survey.asp
Some of you have reached many of your members, and so for some even rare diseases we have hundreds of entries - Bravo! Now we need you to send this far and wide...
We've extended the survey so that we can be sure to capture a more representative sample. Please encourage your members to answer this survey. We will keep it open until we have sufficient numbers of answers from common diseases, and broader representation from rare disease communities and underserved communities. So please send this URL out to your members - asking them to answer the questions today! It will only take them five minutes. You will be receiving both the raw data for your condition, as well as the completed reports. This data will be useful to you as you work to understand what the clinicians who treat your members know and don't know. You will also come to understand how your members learn best. But you will need more than 6 or 7 answers to make this useful!
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