Should sarcoidosis be a community?

[appyalison]

[stone-UK]

hi

have a look at

sila.org.uk/

[appyalison]

Thank you stone, yes, I have joined sila and found the best information available but on blf there are dozens of support groups. Nothing for sarcoidosis though - just wondered if there was a reason for this. Thank you for your kind help. Alison

[Hidden]

Hi Alison, on healthunlocked there are dozens of health support groups, healthunlocked provide the space / support communities for the health support groups like BLF, Heart UK and space for any organisation in UK and overseas.

BLF has just this one community at healthunlocked.

I'm sure sila could join unlocked if they wanted to set a community up here.

You might want to consider an international site as well as sila:

mdjunction.com/forums/sarco...

The BLF site of course includes all lung related discussions including sarcoidosis.

Best wishes BC

[Hidden]

Hi there! I have IPF (Ideopathic Pulmonary Fibrosis) and IPPFE (Ideopathic Pleuroparenchymal Fibroelastosis) and I think the "problem" is that COPD has been identified on Healthunlocked as a separate Community and also as part of the Community that is identified as "Lung Disease" ! Personally I would prefer that the COPD "Community" would be dropped because COPD is not a lung disease in itself, it is only an umbrella term covering the lung diseases Emphasema and Bronchitis.

[Hidden in reply to Hidden]

Hi Mapal, the COPD community on Health Unlocked is nothing to do with BLF.

BLF don't exclude any lung condition, they do include all, the other communities are so named by the people that set those communities up. I

[Hidden in reply to Hidden]

Blakey, I wasn't referring to BLF, just to the Healthunlocked site but thank you for your comment.