There appears to be only one special interest group that has its focus on Barth syndrome--Barth Syndrome Foundation, Inc. The website for this non-profit organization is: www.barthsyndrome.org ....
EnviroLink is a non-profit organization providing comprehensive, up-to-date environmental information and news. http://www.envirolink.org/
Environmental Working Group - http://www.ewg.org Center for...
They give an organized voice to a group of American people with the same opinions. They help Americans raise their voices loud enough for Congress to hear.