Is it just me, or wouldn't it be great if their was 1 master list somewhere of detailed information of Doctors, Hospitals, Clinics and contact information through out the United States and Abroad for Doctors that Either Specialize, Treat or are at least interested in this rare disease? I see so may questions being posted about where to find a doctor. I of course am also looking for experienced doctors of this illness. Does anyone know of a list like this.... if not, what would it take to begin the creation of such a list to assist everyone in the internet world looking for experienced, hands on help within the medical field? Or is this just me dreaming... Hope you are all having a no-flare day!
I put this idea into their suggestion box yesterday and got a reply that they are working on it - hope to see such list pretty soon, if not I'll get back to them
Hope you have a great sunday
Great idea Domina. There is the Doctors site but its rather muddled. One master list for UK, USA, Canada, Australia, Europe etc... would be fantastic.
Wishing you all a 'comfortable' sunday
God Bless
mads
Great idea, I had been thinking lately that this is something that this group could do with..! I will chat to Scott and Ben (founders of Bens Friends) and see what I can find out.!
well, 3 weeks ago they said that they are working on it but I haven't seen or heard anything yet.
We're working on it! Our friend Chris Wilson has been donated his time to Ben's Friends to build a database for doctors that treat EM (and the other 34 rare diseases we support with communities). Should be a week or two. You will be able to add to the database and endorse a physician. :)
btw - we have very little money and chris is donating his time. he's a very kind person. but that is the delay.
I am abnd sure all the members are very thankful to Chris and everybody else who works behind the scenes to make this and other communities possible :) Thanks Scott :)
thanks for the update and to Chris.