Last week 180 family members affected by fatty acid oxidation disorders gathered in Denver to listen to a number of experts report on the issues important to them: nutrition, new treatments, educating doctors, and specific disorder problems. These same experts fielded questions from the audience.
I had the opportunity to talk personally to several of the geneticists. A lot of information was exchanged and the overwhelming sense of optimism imparted was gratifying. It is true that these disorders are rare and few but there are people knowledgable about them and working on solutions.
By far, most of the attendees were apparently healthy, though many were dealing with many different health problems, not just FODs. Patients and their families just receiving their diagnosis should take heart knowing that people are living well with these disorders and the professionals involved are working hard to find answers.