Chat Room


Hello, Chat Friends:

Please join us for our next chat session, Wednesday, July 29 at:

2:00 p.m. Hawaii Time
5:00 p.m. Pacific Time
6:00 p.m. Mountain Time
7:00 p.m. Central Time
8:00 p.m. Eastern Time

Dial  (319) 527-3511. At the prompt, enter access code 865672# .

Some topics up for discussion:
— The EveryLife Foundation for Rare Diseases has asked our patients to participate in a survey about the burdens that come with having a rare disorder. Deberah will share the opportunity with you.
 — Would you like to join a new Facebook Group that the APBD RF just launched for patients who were previously misdiagnosed?
 — We have a chat member who wants to know about the degree to which you have offloaded life decisions and details as your symptoms become more pronounced. I hope you will share your considerations, any limits you set, and how things are proceeding.
 — What’s on your mind these days?

 

Very best,
Harriet
Volunteer Chat Moderator