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TOPICS
ON THIS PAGE: Organizations/Advocacy | Heath
Information/Research
LINKS
NATIONAL/INTERNATIONAL
ORGANIZATIONS and ADVOCACY:
Epilepsy
Foundation: www.epilepsyfoundation.org
The Epilepsy Foundation is the national voluntary agency solely dedicated
to the welfare of the 2.7 million people with epilepsy in the U.S. and their
families. The organization works to ensure that people with seizures are
able to participate in all life experiences; and to prevent, control and
cure epilepsy through research, education, advocacy and services. In addition
to programs conducted at the national level, epilepsy clients throughout
the United States are served by affiliated Epilepsy Foundation offices in
nearly 100 communities.
American Epilepsy Society:
www.aesnet.org
The American Epilepsy Society promotes research and education for professionals
dedicated to the prevention, treatment and cure of Epilepsy.
Mother to Baby: www.mothertobaby.org
MotherToBaby,
a service of the non-profit Organization of Teratology Information Specialists,
is dedicated to providing evidence-based information to mothers, health
care professionals, and the general public about medications and other exposures
during pregnancy and while breastfeeding. MotherToBaby affiliates support
and contribute to worldwide initiatives for teratology education and research.
Citizens
United for Research in Epilepsy (CURE): www.CUREepilepsy.org
Citizens United for Research in Epilepsy, is a volunteer-based nonprofit
organization founded by parents of children with epilepsy who were frustrated
with their inability to protect their children from the devastation of seizures
and the side effects of medications. Unwilling to sit back and accept the
debilitating effects of epilepsy, these parents joined forces to spearhead
the search for a cure.
Epilepsy.Com:
www.epilepsy.com
Epilepsy.com exists to inform and empower patients and families living
with epilepsy. We offer a roadmap to understanding the epilepsies, how
they touch people's lives, and the options for treatment. To assist in
following that roadmap, we also offer a forum for community and the sharing
of insights by patients and caregivers. We seek to enable more productive
relationships with caregivers, more effective care, and better lives for
those with epilepsy.
Epilepsy Canada: www.epilepsy.ca
Epilepsy Canada is the only Canadian non-profit organization whose mission
is to promote and support research into all aspects of epilepsy, and to
create awareness and understanding about epilepsy through educational
programs.
National
Council on Patient Information and Education: www.talkaboutrx.org
NCPIE's mission is to stimulate and improve communication of information
on the appropriate use of medicines to consumers and health care professionals.
NCPIE develops programs, provides educational resources, and offers services
to advance the common mission of its members.
My Epilepsy Story: www.myepilepsystory.org
My Epilepsy Story is a forum to unite with ONE voice, women and children
who are affected by this devastating neurological disorder. We share the
stories of women and children living with epilepsy and the ones that have
died from epilepsy……all in an effort to find better treatment,
a cure, and to increase awareness for women and children’s health
in epilepsy.
By raising
awareness, improving education, and increasing funding for research, we
can improve the lives of ALL women and children who suffer from the devastating
neurological disorder called epilepsy. My Epilepsy Story will educate,
advocate, and fund cutting-edge research for women and children living
with epilepsy. We will propose a bill, to provide federal funding for
a national pregnancy registry. To accomplish these goals, My Epilepsy
Story will attain 501(c)3 status and will partner with other organizations
and corporations to fulfill our vision. In addition, My Epilepsy Story
will join with the International League Against Epilepsy, to help address
the needs of women and children living with epilepsy across the globe.
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HEALTH
INFORMATION and RESEARCH STUDIES:
Valproate
Study (MGH Genetics Unit):
The
Genetics Unit of Massachusetts General Hospital is looking for children
who were exposed to the anticonvulsant drug, valproate, before birth.
There has been some concern that prenatal exposure to this drug increases
the risk for Autism Spectrum Disorders (ASDs) in some children. We are
studying whether the effects of exposure to valproate during pregnancy
depend on the child’s genetic makeup (the presence of certain genes).
To
participate in this study, the children must be at least 2 years of age.
The research study would require only a one-day visit as an outpatient
free of charge. For some children, the visit would be shorter than an
entire day. Participants will receive $100 for his/her participation,
and travel expenses will be reimbursed.
If
you are interested in participating or would like more information, please
call us at our toll-free number 1-866-354-1523.
Motherisk:
www.motherisk.org
Your source for evidence-based information about the safety or risk of
drugs, chemicals and disease during pregnancy and lactation
National Pregnancy Registry for Atypical Antipsychotics: www.womensmentalhealth.org/pregnancyregistry
The National Pregnancy Registry for Atypical Antipsychotics is
dedicated to evaluating the safety of atypical antipsychotic medications
that may be taken by women during pregnancy to treat a wide range of mood,
anxiety, or psychiatric disorders. The goal of this Registry is to gather
information on the safety of these medications during pregnancy, as current
data is inconclusive. CALL
TOLL-FREE: 1-866-961-2388
MGH
Center for Women’s Mental Health: www.womensmentalhealth.org
MGH Center for Women’s Mental Health was designed in an effort to
provide scientifically sound and clinically useful information to caregivers
and patients at a time when the field of women's mental health is quickly
evolving.
Seizures.net:
www.seizures.net
Seizures.net publishes recent developments in the treatment of epilepsy.
The web site provides information to the public and health care professionals.
Eurap
International Registry: www.eurapinternational.org/
Eurap International Registry was aunched in Europe in 1999 by a consortium
of independent research groups and later extended to several other nations
worldwide. The aim was to collect data on the risk of antiepileptic drugs
during pregnancy and share it in an international registry. At present,
physicians from 40 countries in Europe, Australia, Asia and South America
are actively collaborating, and more than 17,700 pregnancies have been
registered.
UK
Epilepsy & Pregnancy Register: http://www.epilepsyandpregnancy.co.uk/
The UK Epilepsy and Pregnancy register was established in 1996 for pregnant
women
in the UK. The
major objective is to obtain and publish information on the frequency
of major malformations, such as heart defect, spina bifida and cleft lip,
among infants whose mothers take one or more antiepileptic drugs (AEDs)
to prevent seizures.
Australian Pregnancy Register: www.victorianepilepsycentre.org.au
A voluntary Australia wide registry of patients who become pregnant while
taking an anti epileptic drug has been established. The primary aim of
the register is to determine the incidence of adverse foetal outcomes
resulting from pregnancies in Australian women who were taking anti epileptic
drugs (AEDs).
NIH
Clinical Trials Site: www.ninds.nih.gov/health_and_medical/studies.htm
Links to disorder-specific clinical trials.
MEDLINEplus
Health Information: www.nlm.nih.gov/medlineplus/epilepsy.html
MedlinePlus brings together authoritative information from NLM, the National
Institutes of Health (NIH), and other government agencies and health-related
organizations. Preformulated MEDLINE searches are included in MedlinePlus
and give easy access to medical journal articles. MedlinePlus also has
extensive information about drugs, an illustrated medical encyclopedia,
interactive patient tutorials, and latest health news.
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