Help us, help you!
Dear APBD Patient (with confirmed diagnosis):
The Foundation can better target research if we hear from the wide APBD community. Recently, we have heard from some of you on APBD diets, possible new health problems, misdiagnosis experiences, and genetic testing. But we need to hear from the entire patient community to better target research on these and other areas of concern to you.
For example, some of you have asked about an appropriate APBD diet. Currently, we do not have a medically established diet for APBD patients. But your experiences with special diets may help research efforts to develop diet guidelines for APBD patients.
We are thinking of doing periodic surveys with the patient community to get at these APBD issues, but do not want to overburden anyone. The surveys would be tested in a focus group to ensure that they are answerable within 15 minutes. However, what survey frequency seems reasonable to you? Six months? 12 months? or 18 months?
Also, how would you want to receive such surveys? According to survey specialists, there are two good survey methods for the APBD community: (1) Snail mail or (2) E-mail with web link. In either case, your data would be pooled with the others and aggregated for analysis; the overall results would be shared with you.
With your support, the first survey would be launched in the latter part of April.
To sign up for periodic surveys, please contact us at Sharon@APBDRF.org or phone 646-580-5610 and indicate as much of the following information as possible:
Subject: Periodic Surveying
Name
Physical address
E-mail address
Acceptable frequency of surveying: 6,12, or 18 months
Preferred method for receiving surveys: (1) snail mail or (2) email with web link
By participating in these surveys, you will have a voice in future APBD research.
Most Sincerely,
Gregory Weiss
