RARE Mental/Neurological
Conditions
American
National MPS (Mucopolysaccharidosis) Society
BDSRA Batten Disease
Support & Research Association
Body
Dysmorphic Disorder (BDD)
Cerebro-Costo-Mandibular-Syndrome
(CCMS) Support Group this is an informal support
network for families of children with CCMS. They are currently beginning
a research study on CCMS in conjunction with Case Western Reserve University
Childhood
Disintegrative Disorder
Chromosome
22 Central provides support
& information group for Chromosome 22
related disorders
Dandy
Walker Home Page Dandy Walker is known by many
names: Dandy Walker Syndrome, Dandy Walker Malformation, Dandy Walker Cyst,
Dandy Walker Variant
Delayed
sleep phase syndrome
Duane
Retraction Syndromea place for those affected by Duane
Retraction Syndrome (an eye mobility disorder) to share experiences and
information with others
Dubowitz Syndrome
Parents' Support Page
Ehlers-Danlos National
Foundationorganization for people with Ehlers Danlos
Syndrome, agenetic connective tissue disorder
Eric's
Williams Syndrome Site this
site is for the families , who are caring for a loved one with the
rare disease , Williams Syndrome
Explosive
Child by Ross W. Greene, Ph.D. A wonderful site bases
on the book "The Explosive Child". Is the internationally
acclaimed book by Dr. Ross Greene that provides a more contemporary
conceptualization of inflexible, easily frustrated, explosive children,
and describes a new, practical, comprehensive approach for
helping these children at home and school. The book – which has been featured
on The Oprah Show, DatelineNBC, and Good Morning America
– has been
published in seven languages and is now available in
a revised paperback edition.
Genetic
Conditions/Rare Conditions Support Groups & Information Professionals,
educators, or individuals seeking information on genetic conditions or
birth defects
Hemangioma and
Vascular Birthmarks Foundation provides support
and referrals for children and adults born with hemangiomas and other vascular
birthmarks
International
Fibrodysplasia Ossificans Progressiva Association (IFOPA) Fibrodysplasia
(Myositis) Ossificans Progressiva is a rare, debilitating disease disease
in which normal bone forms in abnormal locations, such as in muscles, tendons,
ligaments, and other connective tissues.
International
11;22 Translocation Network (English, French, German,
Dutch, Spanish) representing over 60 families from Canada, USA, England,
South Africa, Portugal, Sweden, Denmark, New Zealand , Germany
Invitation
for Asperger Society
Kabuki Syndrome
Network (KSN)has two main goals: 1) to act as both
a source and an index of information on Kabuki syndrome (KS) and 2) to
help families support each other by sharing their experiences
Krabbe-Disease
Leber's
Links: Leber's Congenital Amaurosis, Blindness & Visual Impairment
the site is designed to provide a co-ordinated approach in helping us all
understand this disorder better, by allowing those with LCA and their families
to easily access, but most importantly, to share, related information,
new research, experience and ideas
Leukodystrophy
MGH
Neurology Chat Rooms
Microphthalmia,
Anophthalmia and Other Related Eye Disorders this
site was created by Diann O'Riordan - and it was started to bring together
families, share her personal stories and experiences, and to help new parents
feel less alone
Moebius Syndrome Foundation
craniofacial condition & a rare neurological disorder
Movement
Disorders
Multiple
Hereditary Exostoses (MHE) provides a support group for
kids with MHE and their families. FYI...MHE is a rare genetic bone disorder.
Myelin Project
aims to accelerate research on Myelin repair
National
Enuresis Society
National Organization
for Rare Disorders (NORD) since 1983...working
toward the prevention, treatment, and cure of rare "orphan" diseases.
NINDS-
Information about Neurological Disorders
Office
of Rare Diseases (ORD) here you can find information
on more than 6000 rare diseases, including current research, publications
from scientific and medical journals, completed research, ongoing studies,
and patient support groups
Pick's
Disease
Pierre Robin
Network a site dedicated to supporting families affected
with Pierre Robin Syndrome/Sequence
Poland's
Syndrome provides information, research articles, discussion
board, links
Prader-Willi Syndrome
Association (USA) provides parents and professionals
a national and international network of information, support services,
and research endeavors to expressly meet the needs of affected children
and adults and their families
Pediatric Primary
Immune Deficiency Page provides a community that
brings together parents and caregivers of children affected by a Primary
Immune Deficiency (PID)
Proximal Femoral
Focal Deficiency
Virtual
Support
Group
(PFFDvsg) the goal of the PFFDvsg is to be
a PFFD information source and a 'virtual support group' for parents of
children with the PFFD birth defect. PFFD is a rare birth defect that affects
only a small percentage of newborns, but nobody should have to face it
alone. Please come here to learn about PFFD and to get strength and encouragement
from other parents of PFFD children
Rare
Genetic Diseases In Children the father of a child
with a rare, untreatable, genetic disorder, Paul Murphy, became frustrated
at the lack of a "focused" site for locating help. So he developed this
site as an aid to others.
Ring
22 Chromosome Listserv Archives and Info Archival
web pages of postings to a listserv families with members with Ring 22
Chromosome Disorder can subscribe to. Anyone may access and read the past
postings archives. Site also has page to join/subscribe which is free.
Rubinstein-Taybi
Syndrome this site is dedicated to people with
Rubinstein-Taybi Syndrome (RTS). Information about RTS, along with over
50 pages of "Our Pages" . . . people with RTS
Rumination
Disorder
Selective
Mutism
Selective
Mutism Foundation
Schiz
Kidz Buddies: Schizencephaly Support Groupprovided for
the parents, siblings, physicians, therapists, and friends of children
born with Schizencephaly
Septo-Optic
Dysplasia Support Group created to help parents
out there with children who have septo-optic dysplasia, or S.O.D. (also
known as deMorsier syndrome)and optic nerve hypolplasia (O.N.H.)
Severe Combined Immunodeficiency
(SCID) Home Page
Sturge
Weber Syndrome (SWS) this site displays the more
personal aspects of SWS and how it affects one's daily life
United Leukodystrophy
Foundation: Leukodystrophies are genetically
determined progressive disorders that affect the brain
Williams Syndrome
Williams
Syndrome Association
Williams Syndrome Foundation
the Williams Syndrome comprehensive web site
Wilson's
Disease Association |
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Created
& Designed by Judi Coats (Updated on January 7th, 2006)