Survey from Rare Barometer

[zoe69]

Rare Barometer has launched a new survey, if you are interested in participating.

Share your experience of seeking a diagnosis for your rare disease!

This survey should take around 20 minutes to complete.

sphinxonline.com/surveyserv...

[winfong]

Thanks. Unfortunately, I found it impossible to get past page 28, where they ask you for the name of your rare disease. Seemed to be a bug if yours wasn't in the list - infinite loop.

[zoe69 Moderator Volunteer Vasculitis UK in reply to winfong]

I found mine, GPA. I guess the illness must be listed as Rare Disease in the organisation.

[tiachibird in reply to winfong]

I also had the same problem. Vasculitis mpa was not recognised.

[zoe69 Moderator Volunteer Vasculitis UK in reply to tiachibird]

MPA is on the list, all ANCA associated vasculitides are. Just type MPA.

[winfong in reply to winfong]

Yeah, mine was extracranial GCA, with PMR. There was a place to type it in, but attempting to do so just kept throwing me back to the list. Guess I'm just too rare for them. 😉

[vivdunstan Volunteer in reply to winfong]

My disease is usually referred to by the medics as cerebral vasculitis, but I had to enter its alternative name in this survey ie primary central nervous system vasculitis. Luckily I knew it to try.

[Dancerina in reply to vivdunstan]

Part of the difficulty with treatment is actually naming the rare disease and then getting your insurance to recognize it! GPA - cerebral vasculitis- polyangiitis of the central nervous system- chronic cerebral granulomatous process in common variable immunodeficiency - ???

[AndrewT]

Dear zoe69,

I have 'Done' this Survey, it IS a bit 'Long Winded' and a bit Repetitive in places. However it isn't Difficult, with a lot of 'Don't Know / Not relevent' Boxes- along with, one or two, places were you can Explain your 'Condition, in more detail.

Do 'Fill In', this questionaire Fellow 'Auto- Immuners' (Hey a New Name, for us!) as, this kind of information Will Definitly 'Help' others Like Us in the Future.

AndrewT

[juli-pa]

Completed