Patient Support Groups in New Jersey
Disclaimer: This listing is not all-inclusive of patient support groups
throughout New Jersey.
Inclusion in this list does not imply endorsement of these groups by
Turner Syndrome Society of the US / New Jersey Chapter
The goal of the Turner Syndrome
Foundation (TSF) is to support research initiatives and develop programs
for education - information - support, which will increase professional
awareness and enhance medical care of those affected by Turner syndrome.
Early diagnosis and comprehensive treatments over the lifespan will
lead to a brighter and healthier future for all young girls and women
with Turner syndrome.
TSF is a registered 501(c)3
organization incorporated in New Jersey, EIN #27-1409942.
Turner Syndrome Foundation, Inc., P.O.
Box 726, Holmdel, NJ 07733
Toll Free: 800-594-4585
X Syndrome Association of New Jersey
The FXANJ is an
association of families and professionals dedicated to improving the
lives of those living with Fragile X syndrome. For more information
Genes, My Risk
My Risk is a support group designed for people at
high risk of cancer due to their genetic status and their family members who wish to learn
more. For more information or to register, please contact Dana Farengo
Clark at 856-325-6716 or call 1-800-8-Cooper. This group meets in
meetings are scheduled for 6:00-7:30pm on April 23 and October 1.
New Jersey Rett Syndrome Association
The goals of the New Jersey Rett Syndrome Association
(NJRSA) are to contribute towards an improved quality of life for girls
and women affected by Rett Syndrome, raise awareness of the disorder and
support research for a treatment and cure. By raising the awareness we
foster public attitudes conducive to early intervention, treatment,
support and research of Rett Syndrome. NJRSA is a 501(C)3 organization.
For more information visit www.njrsa.org.
Network21 is a parent-run network of families with Down
syndrome in Central New Jersey. This group connects and supports
parents, caregivers, and individuals with Down syndrome. Network21
identifies and shares resources that can better provide for the needs of
individuals with Down syndrome in our community. Network21 is affiliated
with the National Down Syndrome Society, the National Down Syndrome
Congress and The Arc of Middlesex County. Network21 advocates for and
supports organizations that promote acceptance of people with Down
syndrome and other disabilities and work to better the lives of people
with DS. www.dsnetwork21.com
Network21 encourages new and expectant parents who have
been given a diagnosis of Trisomy 21 to contact one of our board members
for information and support: Jennifer Robertson, President
/ 908-309-1588); Kim Taylor, Vice President
/ 732-610-8451); Lauren Hurley, New Parent Outreach
Time for Healing
for Healing is a support group for those who have ended pregnancies for
fetal ultrasound or genetic testing abnormalities. This group
generally meets monthly on a Sunday evening in Hamilton, NJ.
Coordinators are Denise Richardson, RNC, and Dee Lewis, MA, MS.
Potential members can contact Dee Lewis at (609) 394-4026 for more
(Healing And Recovering after Termination)
HART is a
group is for people who have ended pregnancies because of fetal
abnormalities. This group meets in Long Branch, NJ. Please call
(732) 923-6526 for more information.
F.A.T.E. (Feelings After the Termination Experience)
is a support group for individuals or couples who have
ended a pregnancy due to a fetal abnormality. The group meets on
Wednesday nights at Overlook Hospital in Summit, New Jersey. Contact for
more information: Gisela Rodriguez ((973) 972-3302 /
firstname.lastname@example.org) or Christina
Botti ((732) 235-6350 /
AFTER is a
group for people who ended a pregnancy with a genetic disease or
congenital anomaly. This group meets in Hackensack, NJ.
Call (201) 996-5264 for more information.