| Mission
Statement
The mission of the American Hemochromatosis Society (AHS) is to
educate and support the victims of HFE-associated hereditary hemochromatosis
(genetic iron overload) and their families as well as educate the
medical community on the latest research on Hereditary Hemochromatosis
(HH). AHS' aim is to identify through genetic testing, the 43 million+
Americans who unknowingly carry the single or double gene mutations
for HH which puts them at risk for loading excess iron.
AHS
recognizes and envisions that it is possible now and in the future
to prevent needless deaths, disability, organ damage, very costly
joint replacements, chemoembolization and surgery for liver cancer,
and organ transplants caused by hereditary hemochromatosis/iron
overload through:
- Routine/universal
screening for HH of the American public
- DNA newborn
genetic screening for HH for all children in America
- Establishment
of universal guidelines for diagnosis and treatment for HH in
minor children and adults
- AHS Projects
which involve patient, family, community and governmental cooperation
and support for screening and awareness include:
- "Children
HHelping Children" (CHHC)) Screening
& Awareness Project for pediatric hereditary hemochromatosis
- "Seniors
HHelping Seniors" (SHHS) Screening
& Awareness Project for geriatric hereditary hemochromatosis
- "Hereditary
Hemochromatosis Congressional Challenge"--DNA testing
of all members of Congress
- "Hereditary
Hemochromatosis Celebrity Challenge"--DNA testing of
all celebrities, including those in the film and music industry.
What
We Do
1. AHS conducts media public awareness/education campaigns to:
- Alert the
public to HH as the most common hereditary disease in America
- Urge screening
and early detection to prevent premature death and disability
- Inform the
public that an inexpensive, confidential, DAT (direct to consumer)
commercial DNA test kit and blood panel for HH are now available
for screening adults and children
- Encourage
patients to be assertive in requesting routine iron panels from
their doctors which simultaneously measure both iron overload
and iron deficiency
- Encourage
patients to be assertive in getting treatment if tests confirm
excess iron storage regardless of genetic status.
- Recognize
health risks of routine iron supplementation
- Endorse the
use of HH donor blood to save lives of patients who need a safe
supply of blood and publicize the blood banks which accept HH
blood as donor blood.
- Emphasize
that even women who are of reproductive age are not automatically
"protected" from the effects of clinical iron overload/HH
by blood loss due to monthly menstruation and/or childbearing
and also need to be screened for excess iron.
- Link the
following common diagnoses and symptoms to HH as a possible underlying
cause: diabetes, arthritis/joint pain, abdominal pain, liver/gallbladder
disorders, heart irregularity, depression, chronic fatigue, fibromyalgia,
anemia, impotence, infertility, loss of interest in sex, hormonal
deficiencies, premature menopause, hair loss, hypothyroidism,
and darkening of skin color without exposure to the sun, liver
cirrhosis, primary liver cancer, and liver/heart transplant.
2. AHS coordinates a citizen lobby with a legislative agenda
that includes:
- Federal and
state laws ensuring the privacy of genetic test results
- Federal and
state laws banning genetic health, life and disability insurance
and work force discrimination
- Federal law
to end the discrimination and stigmatization of HH blood at blood
banks and encourage a mandate from the FDA that HH blood be used
by all blood banks as donor blood.
- Federal and
state funding for research to develop new drugs and techniques
for HH diagnosis, treatment, and management
- FDA mandate
requiring warning labels on iron-enriched food products and vitamins
that excess iron is a health risk for some people with iron overload,
hemochromatosis and other iron loading conditions.
- AHS facilitates
physician education through:
- Establishment
of HH Clinics at medical centers around the country
- Promotion
of CME seminars for physicians
- Creation
of a network to encourage regular communication and exchange of
information among doctors and researchers interested in HH
- Emphasis
on the importance of assessing iron storage and genetic status
of patients before recommending iron supplements
- Creating
a network of patients and physicians for exchange of information
and patient data which can be used to create new strategies for
HH.
- Exhibit at
national medical conventions such as the American Society of Hematology(ASH)
and the American Association of the Study of Liver Disease (AASLD)
to distribute educational literature to physicians and other medical
professionals.
3. AHS provides support for HH patients, families and friends
through:
- Online support
groups and discussion lists (listserv) (FHHF discussion group)
- Direct email/telephone
patient support
- Physician
referral in the USA and world
- Free educational
literature on hemochromatosis by mail
- Internet
Web Page with the latest HH information and news (www.americanhs.org)
- Exhibits
at health fairs and national medical conventions
- Encourages the public to organize chapters of AHS throughout the country where patients and their
families and friends can meet, exchange experiences, information
and give support to one another.
4.
AHS is a 501c3 non profit health organization. AHS gratefully
accepts your tax deductible donations which will be used to support
the following:
Donations
are used to provide the public and medical community with educational
literature and materials through a comprehensive web site and printed
materials, as well as support expenses incurred by the society which
include: office supplies, telephone, postage, copying expenses,
press kits, etc. Checks should be made out to: "AHS,
Inc."
All donations may be in any amount, large or small, "in honor
of" or "in memory of" anyone you wish. Mail donations
to American Hemochromatosis Society (AHS), 4044 W. Lake Mary Blvd.,
Unit #104, PMB 416, Lake Mary, FL 32746-2012, U.S.A.
Checks
may be made out to "AHS" or "American Hemochromatosis
Society".
Thank
you!
Disclaimer
- Any medical or health advice provided and hosted on this site will only be given by medically trained and qualified professionals unless a clear statement is made that a piece of advice offered is from a non-medically qualified individual or organization.
- The information provided on this site is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her existing physician.
- Confidentiality of data relating to individual patients and
visitors to the American Hemochromatosis Web site, including their
identity, is respected by this Web site. The Web site owners undertake
to honor or exceed the legal requirements of medical/health information
privacy that apply in the country and state where the Web site
and mirror sites are located. Patient lists and information seekers
names are and always will be held in the strictest of confidence.
Such lists are never sold to other parties.
- Where appropriate, information contained on this site will be supported by clear references to source data and, where possible, have specific HTML links to that data. The date when a clinical page was last modified will be clearly displayed (e.g. at the bottom of the page).
- Any claims relating to the benefits/performance of a specific treatment, commercial product or service will be supported by appropriate, balanced evidence in the manner outlined above.
- The designers of this Web site will seek to provide information in the clearest possible manner and provide contact addresses for visitors that seek further information or support. The Webmaster will display his/her E-mail address clearly throughout the Web site.
- Support for this Web site will be clearly identified, including the identities of commercial and non-commercial organisations that have contributed funding, services or material for the site
- Currently the American Hemochrmatosis Society does not have
any advertising on its site. It also receives no money whatsoever,
now or in the past, from the labs, doctors, or medical institutions
that we recommend or to which we refer patients.
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