I agree with inycrts--- not enough reliable information available. I will have to say this though----- I'd also like to see more people who've never even heard of a PE or DVT to know about them. (I posted a thread a while back about that)

First a person has to know WHAT to search for on the Internet so putting up flyers in doctor's offices, public bulletin boards etc seems like a good way to start getting people to at least aware of the problem.

Sorry for putting my thoughts on your thread, inycrts, but I feel strongly about this lack of the general public knowledge.

I would love to hear what others have done to spread information. I have a follow-up with my surgeon next week and I want to take some information to the orthopedic clinic. I'm hoping I can convince them to had out a brochure on blood clots to all of their patients undergoing surgery.

The National Blood Clot Alliance (NBCA) has patient and healthcare professional brochures available. You can contact them through www.stoptheclot.org The organization was created by patients and is the only government funded patient advocacy organization who represents the entire thrombophilia community and venous clotting community (DVT/PE)

@ daffnea
What I wrote on an earlier thread is just some of the ways to spread the word to the general public. I (and many others) had LOTS of experience doing that for Lyme disease.

http://www.dailystrength.org/c/Pulmonary_Embolism/forum/14312377-how-people-pe-can

You could print out that brochure that retnav spoke about. (Re: Lyme---- tri-fold color brochures were mailed out to us by the hundreds---- absolutely free--- for us to distribute.)

I wonder if such a thing is done by stoptheclot?

Cafe Press is offering T-shirts for sale ($22 to $26) with Stop The Clot on it.

http://www.cafepress.com/mf/58315739/_tshirt

I don't know if stoptheclot gets some of the proceeds or not.

I can't speak for what NBCA does currently but I know when I was still the national Secretary we had sent out DVT/PE awareness bookmarks and Stoplight references to those clinics who were part of the American Society of Hematology (ASH) for use by their physicians and patients. We also mass mailed VTE toolkits for use by such clincs.

In these days of cost cuttings I suspect that, other then newly produced brochures/literature, the resources are available for download on the website unless specifically requested by contacting NBCA HQ in Tarrytown, NY.

The National Hemophilia Foundation (NHF) has a clearning house of brochures available for clinics to order, I know during my tenure with NATT/NBCA, this was the direction their material was going to be made available unless specific brochures were generated by grants for the specific purpose of being circulated to the clinics/hospital/medical centers (such as the DVT/PE spotlight tool was initially funded for distribution by Ortho-McNeil a couple of years ago).

Funding is a very hard problem for a large non-profit organization. Most money is earmarked (Restricted) for a specific reasons (Stop the Clot Patient Seminars, studies, creation of a specific brochure, etc.). There was very little non-restricted funds available and what was there was donated by patients. Mailings can add up very quick and greatly impact a yearly operating budget. For the Board members of NBCA and Medical and Scientific Advisory Board, a lot of those funds were out of pocket; keep in mind both the Board members and the physicians who are part of NBCA are volunteers (non-paid)(Yes they do have a four person paid staff at NBCA HQ)


I had always hoped that our patient community received the same level of public awareness as other very successful campaign (Breast Cancer Awareness as a prime example). We never quite got to that level. The DVT Coalition, owned, operated, and run by Sanofi Aventis Pharmaceutical (makers of Lovenox) invested a lot of money into the March DVT Awareness Campaign from 2005-2009. When generic Lovenox hit the market, this took a huge hit on Sanofi as did the other new oral anticoagulants. As a result, the March campaign has slowly went by each year with bearly an honorable mention. To me, this is very discouraging since I was involved with the initial campaign as a member of the DVT Coalition and helped created several separate State Awareness initiative here in the New England Area.

The U.S. Surgeon Generals "Call to Action" made an initial impact but other then creating another healthcare organization (Venous Disease Coalition), all has been quiet there.

The keys organizations involved with VTE awareness are:

National Blood Clot Alliance - only Patient Advocacy Organization

Clot Connect - healthcare organization (www.clotconnect.org)

Venous Disease Coalition - healthcare organization (www.vasculardisease.org/venousdiseasecoalition/)

North American Thrombosis Forum - healthcare organization (www.natfonline.org)

AntiCoagulation Forum - Healthcare organization (www.acforum.org)

DVT Coalition - Healthcare Organization (www.preventdvt.org)

And I should give a shout out to what could be a patient organization (though never took off and not funded) since the owner is a good friend of mine:

Thrombosis Awareness Project (fvleiden.org)

There are separate organizations who address a specific condition/thrombophilia such as Atrial Fib and the APS Foundation of American, Inc. which fall under the VTE umbrella.

Organizations such as Clot Connect is nearing the end of it's start up grant with no other funding in sight. I'm not sure of the future of the website. An initial grant by the CDC and the University of NC had helped fund the site and content made available there. I hope Clot Connect continues to stay strong, I will continue to provide volunteer work for them as long as there is a place on-line for patient to go.

There may be others but I think I probably rattled on enough and address the key places where resources material can be obtained.

Thank you, retnav, for that information. And I do believe that cost-cutting is part of the answer. Sigh.

So I would guess that unless a person is willing to print out the information themselves there's nothing available for a person to receive.
(I just bought new ink for my printer and-----wow! Printing out 25 or more articles would sure cost a lot.)

I didn't see (and haven't looked at everything yet probably) a concise, brief overview of PE's to alert people as to what they should know in order to ask their doctor the right questions.
Have I missed something?
Or maybe one of 'us' here could write up something and present it to stoptheclot for preview/review and perhaps stoptheclot might put their imprimatur on it?

http://www.youtube.com/watch?v=PyUjHy664EE

This is what one patient organization did for Lyme disease. A Jumbotron in Times Square for about three months (playing intermittently)

I use Lyme advocacy simply because I know way too much about it and wish I didn't!

I wonder if stoptheclot could get a grant from the NIH to pay for a similar Jumbotron for PE's?

Cavey,

http://stoptheclot.org/learn_more/dvt_pe.html

http://www.stoptheclot.org/learn_more/blood_clot_symptoms__dvt.html

I agree there is less information on PE then DVT patient wise. Main emphasis is on DVT dentification because if left unattended, it is the DVT that becomes a PE when the clot breaks off (even if the DVT symptoms or diagnosis were never experienced) and travels to the pulmonary system. Of course there are other medical problems which can result in PE (Trauma for example) without a DVT, but, for the majority of patients, the DVT is the first warning sign of a blood clot.

http://www.boehringer-ingelheim.com/content/dam/internet/opu/com_EN/document/01_news/factsheets/factsheet_venous_thromboembolism.pdf