Chat Room

Hello, Chat Friends:

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