Specific Disorders
If you know of resources which would be appropriately listed here
please let us know. 
Multiple Sclerosis
The
National Multiple Sclerosis Society (NMSS) is the U.S. MS Society dedicated to
ending the devastating effects of multiple sclerosis. The NMSS is the only national
voluntary MS organization that meets the standards of ALL major agencies that rate
non-profit groups. The NMSS supports more MS research and serves more people with MS
than any national voluntary MS organization in the world. The Georgia Chapter of the NMSS provides local
services to residents of Georgia.
The International Federation of Multiple
Sclerosis Societies (IFMSS) is a non-governmental, non-profit making voluntary health
agency and umbrella organization for the 36 established national MS member societies
throughout the world. One of the major IFMSS objectives is to serve as a clearing house
for educational and scientific information about MS. The World of Multiple Sclerosis on
the Internet uniquely provides a vehicle to facilitate the realization of this goal
through providing the highest quality information in a wide range of languages
and by providing links to all National MS Societies that have a presence on the web..
Rare Disorders
The
U.S. National Institutes of Health Office of Rare Diseases offers a Rare Diseases Clinical Research
Database and other services. Here you can find information on more than 6000 rare
diseases, including current research, publications from scientific and medical journals,
completed research, and even patient support groups. There is even a database on
ongoing research at every phase of the process from Requests for Proposals to Clinical
Trials.
The National Organization of Rare Disorders
(NORD) is the only organization of its kind--a unique federation of more than 140
not-for-profit voluntary health organizations serving people with rare disorders and
disabilities. Thousands of affected individuals and their families--as well as support
groups, health care and human service professionals, and advocates for people with rare
disorders and disabilities--rely on NORD's assistance and leadership. NORD is a charity
and continues its mission through the kindness and generosity of its our donors.
Rare Genetic Diseases In
Children is an Internet jump-station to sources of information on rare genetic
diseases affecting children run under the aegis of NYU Medical Center.
Mental Retardation
The
American Association on Mental Retardation is the oldest and largest interdisciplinary
organization of professionals (and others) concerned about mental retardation and related
disabilities. Over 9,500 members in the U.S. and 55 other countries have chosen AAMR as
their association. AAMR's mission is to advance the knowledge and skills of
professionals in the field of mental retardation by exchanging information and
ideas. AAMR therefore publishes "The
American Journal on Mental Retardation (AJMR) [which] is the leader in reporting
original, quality research in biological, behavioral, and educational sciences for
researchers, clinicians, and students in mental retardation and related
disabilities."
The Arc (formerly Association for Retarded Citizens of
the United States) is the country's largest voluntary organization committed to the
welfare of all children and adults with mental retardation and their families. The Arc is
a 501( c)(3) charitable non-profit organization supported by contributions from the
general public. The Arc, with its rich history in advocacy and services, is comprised of
individuals with mental retardation, family members, professionals in the field of
disability and other concerned citizens. The Arc has adopted various positions on issues
that affect people with mental retardation and their families, and the organization's
mission statement forms the basis for the organization's activities.
Down Syndrome
Down
Syndrome Association of Atlanta (DSAA) was
created by metro-Atlanta parents in 1979 in an effort to provide support and
education to families who had children with Down syndrome. They are a source
of information and support to families, work to promote public awareness and
encouraging a better understanding of Down syndrome and individuals with Down
syndrome. They rely solely on donations, member dues and fundraisers to
continue their work for the community. They hold an bi-annual
conference, publish a bi-monthly newsletter, and provide financial support to
parent groups affiliated with DSAA.
The National Association for Down Syndrome (NADS) is
a strong network of support systems with medical, educational, vocational, and social
service professionals who work with children and adults who have Down syndrome.
"We serve children and adults with Down syndrome, siblings & families, and
medical & educational professionals. Our services include parent support services,
audio/visual presentations, seminars, conferences and research reports. We also
produce several products that are available for purchase. These include our popular
"Don't Be Surprised" posters, educational videotapes & pamphlets, and our
NADS Aerobics tape. Membership dues and contributions enable NADS to provide our
many services. As a member, you will also receive our bi-monthly newsletter and notices of
special events & seminars."
The National Down Syndrome Society was established in
1979 to increase public awareness about Down syndrome; to assist families in addressing
the needs of children born with this genetic condition; and to sponsor and encourage
scientific research. Today, NDSS supports young researchers seeking the causes of, and
answers to, many of the medical, genetic, behavioral and learning problems associated with
Down syndrome; sponsors internationally renowned scientific symposia; advocates on behalf
of families and individuals affected by this condition; provides information and referral
services through its toll-free number; and develops educational materials, many of which
are distributed free of charge.
Fetal Alcohol Syndrome (FAS)
The National Organization On Fetal Alcohol Syndrome
(NOFAS) is a 501-(c)(3) nonprofit organization founded in 1990 dedicated to eliminating
birth defects caused by alcohol consumption during pregnancy and improving the quality of
life for those individuals and families affected. All of NOFAS's work is dedicated to
spreading the message that drinking and pregnancy do not mix. The U.S. Surgeon General
advocates complete abstention from alcohol during pregnancy; no research to date has
established a safe level of alcohol.
The University of Washington School of Medicine
Fetal Alcohol and Drug Unit is a research unit dedicated to the prevention, intervention and treatment of Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects
(FAE). They provide info on their research projects and findings, have a list of
support groups worldwide, list international FAS/E conferences as they come up, and
are also the home of the Fetal Alcohol Syndrome/Effects Legal Issues Resource Center.
The Arc's FAS Resource and Materials
Guide: An extensive listing of Fetal Alcohol Syndrome resources. Topics include:
General/overview materials, Medical materials, Identification and Diagnosis, Research,
Prevention Campaign materials, Families with FAS children, Instructional materials, and
Funding.
Fetal Alcohol Support
Network A dozen lengthy articles on various aspects of FAS, especially educational
issues. Also a listing of 250 abstracts of articles on FAS/FAE research.
The
National Academy Press has published "Fetal Alcohol Syndrome: Diagnosis,
Epidemiology, Prevention, and Treatment" by the Committee to Study Fetal Alcohol
Syndrome and has the publication available online.
What the U.S. Centers
for Disease Control is doing to Prevent Fetal Alcohol Syndrome and Other
Alcohol-Related Developmental Disabilities is available online.
Landau-Kleffner Syndrome (LKS)
Massachusetts
General Hospital runs a series of Bulletin Boards and Chat Rooms on Neurology topics.
These sites are frequented primarily by parents and patients with minimal input from the
physicians at MGH. There is a fair level of ongoing discussion and support available
on the LKS Bulletin Board site.
FOLKS! "Welcome
to Friends of Landau-Kleffner Syndrome! We are the UK support group and national
charity for children with Landau-Kleffner Syndrome, their families and interested
professionals. The story so far: FOLKS was established following several years
of hard work and dedication by its founder member, Vicki Horsewell. Vicki established the
Landau Kleffner UK Parent Support Group with the assistance of the UK national charity
Contact-a-Family, which seeks to support families of children with rare conditions by
putting them in touch with other similarly affected families. After two years it become
clear that the number of families of children with LKS or related conditions in the UK has
risen to mean that a national group centred around these children's needs was possible.
Therefore a group of concerned parents and professionals, who had been involved in the
support group, formally asked the Charity Commission to register FOLKS as a national
charity for children with LKS. The Parent Support Group was then registered as a charity
in its own right under the name FOLKS in November 1996." They maintain a basic questions page on LKS and a
page on Speech Therapy and LKS.
Additionally, they run a listserv
on LKS with information available on joining located on their webpages.
Teacch has a review of seizure
disorders in the Autisitc population that includes information on LKS available on their
website.
Mucopolysaccharidosis (MPS)
The National MPS Society now
has a membership of 780 with approximately 380 members having an affected child or
children. Their website has information on the various forms of MPS and they also have a
research fund set up which has granted Summer Research Fellowships and the plan is for
this being a continuous program. "Our ultimate goal, in addition to being a
support group, is to increase our participation by regions, support research into areas
such as carrier detection, early diagnosis, bone marrow transplantation, gene therapy and
hopefully to the eventual finding of a cure."
The Canadian Society for Mucopolysaccharide &
Related Disease was formed to alleviate the isolation felt by MPS parents. "When
diagnosis is first made, parents often with to meet with or at least speak to someone who
has shared their experience. Our organization attempts to facilitate contact where desired
by the family. We have set up a register of families and the degree of involvement they
desire and from this we introduce families to others in an area as close as
possible. By means of a newsletter we aim to keep up to date on current research and
share family experiences. Our second aim is to bring about more public awareness of MPS
diseases. Our third aim is to raise funds for research. We would like to start more
research into MPS diseases in Canada."
The Children's Medical Research
Foundation, Inc. "Our goal is to create awareness of Sanfilippo and other
Neuro-genetic disorders, fund medical research and find a cure. We are a private, 501 (c)
(3) charitable corporation so your gift is tax deductible. With your help Kirby and
thousands of others will beat the odds."
Prader-Willi Syndrome
The Prader-Willi Foundation, Inc.,
is a major national not-for-profit public charity that works for the benefit of
individuals with Prader-Willi syndrome and their families, as well as professionals in all
fields who work with the PWS population.
The Prader-Willi Syndrome Association "was
organized in the United States in 1975 to serve as an international vehicle of
communication about Prader-Willi syndrome (PWS), a genetically based developmental
disability. Now operating as PWSA (USA), this national membership association dedicated to
Prader-Willi syndrome has as its stated mission: to provide to 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."
Angelman Syndrome
Angelman Syndrome Foundation "Angelman
Syndrome is a neurological disorder associated with mental and developmental delay,
characteristic facial appearance (protruding tongue and jaw, frequent smiling), excessive
laughing, microbrachycephaly, abnormal electroencephalograms, seizures, sleep disorder,
hypermotoric behavior, and jerky ataxic gait; this Foundation is established to pursue the
objectives and purposes as follows: (1) Education: (2) Support and Advocacy: (3) Research:
and (4) Fundraising."
Angel Down Under: "Angelman
Syndrome was first discovered by Dr Harry Angelman in 1965, research has always been on
going since then, but it has not been until 1978-88 when DNA testing came more refined,
that diagnosis became easier. There are a lot of men, women and children undiagnosed
in the world, and it is the aim of our homepage and other homepages scattered around the
world, to make Angelman Syndrome well known to the general population, so if you wish,
please read Anthony's Story, or go to the Angelman Links page, where there is a wealth of
information to be found."
The Australian Angelman
Syndrome Association was founded on March 20,1993 at a meeting held at the St. George
Hospital, Kogarah, NSW. The Association has blossomed since that time, mainly through the
hard work of
dedicated parents of children with AS, with the guidance of medical professionals.
Angelman Syndrome: Information for Families &
Professionals is a page of links and information pages for the family and interested
professionals.
Norwegian Society for Angelman
Syndrome (Norsk Forening for Angelman Syndrom): "The society shall work to
improve the quality of life for persons with Angelman Syndrome (AS), as well as spread
information about AS and act as a support to parents of persons with Angelman
Syndrome."
Finnish Angelmans Syndrome (Angelmanin oireyhtymä):
"Mikä on Angelmanin oireyhtymä? Mitä puuhaa ekaluokkalainen Justus? Kuinka
nukkuminen sujuu? Miten tilapäishoito järjestetään? Tervetuloa sivuillemme!
Angelman-lapsen vanhemmat alkavat yleensä huolestua lapsensa motorisen ja puheen
kehityksen viivästymisestä ensimmäisestä ikävuodesta lähtien. Leikki-iässä
Angelmanin oireyhtymälle (AS) tyypillinen käytös ja liikuntatapa auttavat diagnoosin
selvittämisessä."
U.S.
National Institutes of Health information on: ANGELMAN SYNDROME
Sturge-Weber Syndrome
The Sturge-Weber Foundation of the U.S.A. is
a clearinghouse for information concerning Sturge-Weber Syndrome, Klippel Trenaunay Weber
Syndrome, and Port Wine Stain Birthmarks. The Foundation provides support for parents and
individuals with all three syndromes, educates the general public, medical profession, and
government agencies, and funds research. The Foundation has local support groups and a
directory in the form of area representatives and international resource contacts. The
Sturge-Weber Foundation publishes a quarterly newsletter, Branching Out and has many
articles, brochures and publications available including "SWS-A Kids Booklet,"
"Color Me Different-Color Me The Same," "Branching Out With Wisdom," a
book of helpful hints from parents & grandparents, and a video "SWS-An Overview
for Physicians and Families." The Sturge-Weber Foundation offers a new parent
packet that includes a copy of the newsletter, a pamphlet explaining Sturge-Weber
Syndrome, a questionnaire, and a letter from the president of the Foundation. The
Foundation collects information on physicians and researchers who treat/study the syndrome
and make this information accessible to members. The Sturge-Weber Foundation hosts a
national conference; call for further information.
Sturge-Weber Syndrome Support
Group of New Zealand was founded as a means of providing other families,
interested parties or medical professionals in New Zealand with support, information and
reference material on this condition. The Objectives of the Support Group are:
1) To provide support & understanding for anyone dealing with SWS.
2) To provide reference material, contacts, leads and information for anyone dealing with
SWS.
3) To link families within New Zealand with others who are dealing with SWS.
4) To gather information and support and petition the New Zealand Health Authorities to
provide Laser treatment for Port-Wine Stains at no cost to the patient or the patients
family. (Currently this is user-pays and may run up to tens of thousands of dollars)
Norwegian Foundation for
Sturge-Weber syndrome (Norsk Forening for Sturge-Weber syndrom) NFSW is a national
organisation founded in 1993 by private initiative. The foundation is for everyone
with the diagnose SWs and their relatives. Others can become supporting members.
The foundation's goals : Advising, informing, and helping people with SWs and
their relatives. Share knowledge about SWs to hospitals and institutions.
Emphasizing SWs special needs, and make the departments aware about their situation.
Information is available in Norwegian and English.
U.S.
National Institutes of Health - Information on STURGE-WEBER SYNDROME
Cornelia de Lange Syndrome
The
Cornelia de Lange Syndrome Foundation "is a nonprofit [501 (c) (3)] voluntary
health organization based in Avon, Connecticut (USA). The Foundation provides a host of
services that attract, educate, and unite families touched by this rare birth disorder
which causes individuals to develop at a slower rate, both physically and mentally. The
CdLS Foundation is a family support organization which exists to ensure early and accurate
diagnosis of CdLS, promote research into the causes and manifestations of the syndrome,
and help people with a diagnosis of CdLS, and others with similar characteristics, make
informed decisions throughout their lifetime."
Association
du Française du Cornelia de Lange (CdLS-France)
- atteindre, informer et rassembler les familles de personnes atteintes par
le SCDL en France et pays
- francophones voisins,
- leur apporter écoute, aide et soutien,
- sensibiliser l'entourage, le grand public, les professionnels et les
pouvoirs publics aux spécificités du SCDL,
- promouvoir la recherche médicale et éducative sur le syndrome et la
diffuser le plus largement
Associazione
Nazionale di Volontariato Cornelia de Lange (CdLS-Italy) Nel 1993 in Italia è nato un
primo nucleo di genitori e a gennaio del 1997 è stata costituita l'Associazione Nazionale
di Volontariato Cornelia de Lange, per permettere a tutte le famiglie che vivono questa
realtà di confrontarsi e ricevere tutte le informazioni possibili sulla Sindrome.
L'Associazione è costantemente in contatto con la Cornelia de Lange Syndrome Foundation,
presente negli Stati Uniti con migliaia di iscritti edalla quale attingiamoogni novità
sul piano della ricerca e della cura delle persone affette. Scopi principali: divulgare
l'esistenza della Sindrome; tutelare in tutti i modi possibili le persone affette
tenendosi sempre aggiornati sulle novità anche estere e promuovendo all'occorrenza leggi
atte a migliorare le loro condizioni di vita; incoraggiare ed aiutare la preparazione di
personale specializzato per la cura, l'educazione, l'assistenza e la riabilitazione anche
con l'organizzazione ogni anno di un Congresso Nazionale; reperire i fondi necessari per
svolgere tutte le attività.
Other Resources
Recovery Zone! is
intended to be the most comprehensive resource on the Internet for information related to
Discrete Trial Training to ameliorate the effects of autism on young children.
The Worldwide Congress on Pain
link "has the very best and most current information on Pain and its'
Management." VERY heavily supported by pharmaceutical companies.
The Family Village Library
is a source for information about disabilities in language written for the family.
Their webpage on MPS
is very useful and informative. They have information on a wide variety of
disabilities and other conditions.
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