Does anyone know how to raise patient/physician awareness regarding rare disorders?

[LauraL840]

My husband has had a CSF leak from a lumbar puncture for 28 months. While we eventually got a correct diagnosis and are now being treated by the best physician for his condition, we've been through 'the ringer' when it came to getting to where we are today.

As a result I am interested in how to prevent other patients from experiencing multiple misdiagnosis, inadequate treatment(s), and unaware or misinformed physicians. I am my husbands' patient advocate and have a deep desire to educate others' regarding this 'rare' disorder. I believe his neurosurgeon would also be helpful in raising awareness as I know he publishes and teaches on this condition.

I'd like to know more about setting up a 'foundation' or website that could function as a central hub of information for both physicians and patients. I'm just not sure how to do this, how it would be funded, or how to get physicians to read it!

If anyone can help, I'd appreciate it!

[Naominjw]

A lot of us have been through the ringer. Boards like this are good. But sometimes a person cannot find information until they already know what term to look for. Also, tests are needed and without them, we are in the dark.

TV shows like "Mystery Diagnosis" are really god, and even individual blogs are great, but doctors who need to see them the most don't. Many don't even do continuing medical education seminars. If they wanted to they could even listen to lectures free on-line.

If the answer is not in a patented drug so pharmaceutical reps go TO the doctors to educated them about the particular illness, the doctors don't usually think about them.

There are many grassroots organizations created to educate. There are pituitary websites and organizations for that. There are sites fromtiny to huge like http://www.NAMI.org , www.cabf.org, www.autism.com, www.itsnotmental.com, www.mercola.com , www.mednauseum.blogspot.com/ and more than my fingers can type to "spread information" that otherwise may not be spread. But from what I here, even staff working on psych wards are not educated about psychiatric conditions nor the comorbid physical problems.... in spite of organizations willing to educate for FREE!

At least with the Internet, a single person can help 100 others. Just by posting something talking about a CSF leak from a lumbar puncture, which is now available for access via Google, you may have helped others. Now, if only the doctors would read....

I think the only solution, really, would be if the nation and the world used AI diagnostic software (the kind that learns) which all the doctors had incentive to update with their cases, and we all shared. Within 10 years, it would be a wonderful resource. I'm stunned we still don't have it!

[bronze2glo]

I am glad I found this site.There are so many benefits to sharing life storries of the challenges one must go through and still see oneself as a survivor -not a victim.This is my story and I am sticking to it.Over the course of recovery-theres so much I 've learned and am still learning.I think when information is shared --we win--I'm looking forward to being a real partner @ this site.