You can contact the SDS registry for info on how to register. Melissa Alvendia firstname.lastname@example.org Questionnaires are available, but the website is not up and running yet. It will hopefully be on-line soon. They also have pamphlets in PDF…but the margins are off when they are printed. They are working on getting all the supporting organizations a flyer that is easier to print. I just got an email about the flyer last night—so hopefully it will be soon.
The website for the registry will be located at www.SDSRegistry.org
For information on Shwachman-Diamond Syndrome check out Shwachman-Diamond America