Jump to content

Dysautonomia Conference?


firewatcher
 Share

Recommended Posts

Has there ever been a conference on Autonomic Dysfunctions? I know there have been several for Mastocytosis and did not know if there have been any for Dysautonomias? Who does that sort of thing? THe Mastocytosis foundation did theirs and invited a panel of doctors with Q and A for patients at the end. Are we too small/rare? Could we get a grant/funding to put one on?

Link to comment
Share on other sites

mkoven is correct but I think that one is mainly doctor oriented...not sure all can go?

NDRF had two conferencesyears ago, late 90's and 2000 maybe? but they are VERY EXPENSIVE to hold and they could not afford it anymore...

there were video tapes of the first one...POORLY edited but good info with 6 ANS docs including the late great Dr. Streeten who died shortly after that conference...dont know if they are still around or not. Rarely go to ndrf anymore but you can check the site or call.

Link to comment
Share on other sites

Hi,

for anyone in the UK STARS host an annual conference "Heart Rhythm Congress" and STARS (the blackout charity) have a "patient day" as well as the much more expensive physician's sessions. This year there were talks on syncope and one on POTS and they gave out free copies of Dr Grubb's book "The Fainting Phenomenon". The topics change from year to year but they are trying to develop POTS resources and increase awareness of the condition so I suspect it will come up on the agenda again.

STARS US was recently launched and their president came over for the UK conference, I don't know if she has similar plans for a US conference?

Flop

Link to comment
Share on other sites

I was fortunate enough to attend one of the conferences put on by Linda Smith and her husband (NDRF).

It was held in Minneapolis.

It was a wonderful experience. I met Dr. Grubb & Dr. Goldstein. Dr. Low also spoke, as did several others.

It was a two day conference. I learned so much. It was shortly after I was diagnosed by Dr. Low.

I really learned a lot from Dr. Goldstein (National Institute of Health).

My husband attended with me, they had rooms in the hotel at a discounted rate and the conference was

held downstairs in the same hotel. The doctor's ate meals with us and chatted. Answered all questions.

I guess I was very lucky to have had that experience.

Dawn

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...