What is the best way to educate Medical Professionals on rare disorders?

Our son has a rare genetic disorder known as MCAD - Medium Chain Acyl CoA Dehydrogenase. It is a fatty oxidation disorder in which his body lacks an enzyme that allows his body to turn fat into energy. It can be a life-threatening disorder and we have struggled to find doctors who are familiar with the disorder or who take his condition seriously during illness since he looks like a "normal" kid. What is the best way to educate the medical community about these rare disorders so that we can insure our child, and children like him, have the best medical care available?

Thank you in advance for your answers.

P.S. I am an active member of www.fodsupport.org but am trying to find ways locally to educate our local doctors & specialists.

My prayers go to you and your son.

We have experienced doctor ignorance with our daughter. They can't read everything, and the medical model is clear about following the research, not testimonials. So, my best advise to you is to discover any research already done on this topic, and any research underway, and become known. What I discovered is that researchers can be very lonely people, and many are so happy to discuss their research with someone who can understand and use the information, hearing from you can make their day. Contact with you and hearing of your son may help to rekindle enthusiasm, and provide you with other research contacts. Make certain your son's doctor has all of your research contacts and copies of the actual research publication, if possible.

Keep the faith, as they say, and make contact with as many people as possible. You might even try St. Jude's Children's Research for a contact, but then, you have probably already done that.

The best of luck to you and your son,

Mother One

Doctors cannot possibly be trained to be expert on every single illness in the world, its just not possible. There are so many rare conditions, it would be impossible to learn everything they would need to.

Thats why there are specialists, and finding one thats good can be a nightmare, I have 3 patients with rare disorders, and they find it frustrating too.

Try these for a start, maybe you can make some contacts with other parents and see what sort of treatments they are receiving and if they can guide you to a good specialist.

http://www.fodsupport.org/mcad_fam.htm
http://www.climb.org.uk/
http://www.rarediseases.org

i would think that your primary doctor could do some research. i know they are swamped but they have so many more outlets and have much more knowledge as to what is crap and what is truth. has your primary done anything to try to research this disorder?
my niece has aspergers which is a form or autisim. when she was finally diagnosised the primary went out of her way to research what treatments would be best. maybe you need to search for a primary that has more time or is simply more willing to do some legwork for you.
good luck to you. i hope you can change some minds and raise some awareness.