Funding to create and distribute the booklets has been provided by the NORD/Danielle
Barckett Tyrosinemia Fund (tyrosinemia booklet), the NORD/Jesse Gelsinger Ornithine
Transcarbamylase Deficiency Fund (OTC booklet), the NORD/PLS Educational Fund
(PLS booklet), the Acid Maltase Deficiency Foundation (Pompe booklet), individual donors (MSA, Ataxia booklets, GHG and Amyloidosis), and AstraZeneca (Medullary Thyroid Cancer).
In each case, the booklets were written by NORD's medical writers with input
from the sponsoring organizations and reviewed by NORD's medical advisors, or
written by physicians with expertise on the topics.
Each booklet receives a wide distribution to physicians across the United States.
For instance, both the tyrosinemia and OTC booklets were mailed to all members
of the American Academy of Pediatrics, as well as to other physicians. When
NORD's staff members attend medical meetings, they distribute copies of the
booklets.
Physicians (or other medical professionals) who would like to request copies
of the existing booklets should send an e-mail to mdunkle@rarediseases.org
or call NORD at (203) 744-0100.
Individuals or organizations wishing to discuss the possibility of creating
a future booklet for this series should send an e-mail to jcampbell@rarediseases.org
or call NORD and ask for Jean Campbell.