You are here: Home / Rare Disease Information / Patient Organizations Database

Search Patient Organizations

Enter organization name or disease name to search for organizations that help people with rare diseases.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z


The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Pacific Southwest Regional Genetics Network

a/k/a: PSRGN


Calif. Dept. of Health Services
2151 Berkeley Way, Annex 4
Berkeley, CA 94704





800 Number




Email Address

The Pacific Southwest Regional Genetics Network (PSRGN) is a consortium of genetics providers and consumers from the states of California, Hawaii, and Nevada. The organization consists of medical professionals, genetic consumers, health educators, and health policy advocates who have expressed an interest in medical genetics. PSRGN is one of ten federally funded regional genetics networks in the United States. The goals of the organization are to identify, improve and promote: the quality and quantity of clinical genetic services in the three state region; access to and use of quality genetic services; resource sharing, technical assistance, and training for genetic professionals in the delivery of genetic services; genetic laboratory quality assurance in the region; reimbursement for genetic services meeting professional standards; data collection on genetic disorders and services; needs for genetic services; consumer participation in network programs; public and professional education about genetic disorders and services; and cultural sensitivity of genetic services. Consisting of 2,600, PSRGN publishes a bi-annual newsletter, Genetically Speaking, to facilitate current information topics related to genetics and public health. Other materials produced by the organization include a brochure entitled "Questions You May Have for Your Genetic Specialist," and various audio-visual aids. The organization also provides referrals for genetic services throughout its region, holds educational conferences, develops informational brochures, and establishes guidelines on issues pertaining to genetics services.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.

Copyright ©2015 NORD - National Organization for Rare Disorders, Inc. All rights reserved.
The following trademarks/registered service marks are owned by NORD: NORD, National Organization for Rare Disorders, the NORD logo, RareConnect. .