Who We Are
We are a support and information network for individuals and families
with a history of, or interest in, Short Rib Polydactyly Syndrome.
The SRPS Family Network was founded in the fall of 2000 as a
volunteer effort by families whose lives have been touched by the
Our mission is twofold:
* To build a community of families who can share experiences and
information, and provide mutual support on issues related to SRPS.
Because the syndrome is extremely rare, we believe that it is
important for affected families to know that they are not alone. Our
aim is to provide a forum for those affected by SRPS to find and
communicate with others who have had similar experiences.
* To provide information that helps families better understand SRPS
and keep them updated on the latest medical research. Please note,
however, that we are not source for medical expertise or advice; we
encourage individuals to seek such information directly from the
professional medical community.
What We Do
The primary activities of the SRPS Family Network are to maintain this web site, to conduct mailings, and to moderate a Yahoo e-mail discussion group for SRPS Family Network members. New members will be sent an introductory information package and an invitation to join the e-mail discussion group.
The SRPS Family Network is modeled after a similar parents' support
group for Jeune's Syndrome (for more information, please refer to our
support & links page). We gratefully
acknowledge Page Hernon of the Jeune's Syndrome Information/Support
Network for her help and advice in getting this group started.
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[last updated February 20, 2004]