Links
Below you will find a few websites that have been of interest in the group’s search for more information. If you know of other websites that may be of help to those affected by Erdheim-Chester Disease, please email suggested websites to include: support@erdheim-chester.org. (No endorsement is implied of any website listed below. These website links are provided simply as a service to help others find information. The quality of information found at these websites must be evaluated by the reader.)
Acupuncture
In 1997, the
National Institutes of Health
(NIH) issued a
consensus statement
on acupuncture that concluded that there is sufficient evidence of
acupuncture's value to expand its use into conventional medicine and to
encourage further studies of its physiology and clinical value. The
statement was not a policy statement of the NIH but is the considered assessment
of a panel convened by the NIH.
(see also
http://www.acupuncture.com/)
Today in most western cultures it is considered a "new alternative" medicine. In
reality Acupuncture (and its related Moxibustion) are practiced medical
treatments that are over 5,000 years old. Very basically, Acupuncture is the
insertion of very fine needles, (sometimes in conjunction with electrical
stimulus), on the body's surface, in order to influence physiological
functioning of the body.
(see also
http://nccam.nih.gov/health/acupuncture/)
Acupuncture is among the oldest healing practices in the world. As part of
traditional Chinese medicine (TCM), acupuncture aims to restore and maintain
health through the stimulation of specific points on the body.
Air Care Alliance
The Air Care Alliance is a nationwide league of humanitarian flying
organizations whose volunteer pilots are dedicated to community service. This
groups includes volunteers who perform public benefit flying for health care,
patient transport, disaster relief, environmental support, and other missions of
public service.
Air Charity Network™ (ACN)
Provides access for people in need seeking free air transportation to
specialized health care facilities or distant destinations due to family,
community or national crisis.
American Pain Foundation
Founded in 1997, the American Pain Foundation is an independent nonprofit
organization serving people with pain through information, advocacy, and
support. Our mission is to improve the quality of life of people with pain by
raising public awareness, providing practical information, promoting research,
and advocating to remove barriers and increase access to effective pain
management.
Angel Flight
A non-profit charitable organization of pilots, volunteers, and
friends. They will arrange free air transportation for any legitimate,
charitable, medically related need. They will also arrange transportation of
those people who are financially distressed, or who are in a time-critical,
non-emergency situation due to their medical condition. Angel Flight primarily
serves patients needing transportation to or from the heartland region. As
members of the Air Care Alliance, they will coordinate with other organizations
to arrange transportation for patients on longer flights to other parts of the
country outside of the Heartland region.
Angels of the OR
Bringing life-saving surgery to those who need it. Provides
neurosurgical care for patients with no insurance, personal funds or an ability
to pay to pay for treatment.
But You Don’t Look Sick
ButYouDontLookSick.com magazine is about living life to the fullest with
any disability, invisible disease, or chronic pain and features a collection of
articles, personal stories, book and product reviews, health resources and an
active message board for the disabled, or those living with chronic pain or
illness.
CORD
CORD is Canada's national network for organizations representing all
those with rare disorders. CORD provides a strong common voice to advocate for
health policy and a healthcare system that works for those with rare disorders.
CORD works with governments, researchers, clinicians and industry to promote
research, diagnosis, treatment and services for all rare disorders in Canada.
Diabetes Insipidus Foundation, Inc.
The mission of The Diabetes Insipidus
Foundation, Inc. is improved treatment, and ultimately the prevention and cure
of all forms of diabetes insipidus through research. We will promote a greater
public awareness and understanding of the disease and will serve patients and
their families with informational material and through the quarterly publication
of Endless Water. We will promote Diabetes Insipidus as "A
DiFferent Diabetes" so that people will know that there is
another diabetes.
Disabled Travelers
Welcome to DisabledTravelers.com, a resource dedicated to
accessible travel information. This new site will provide you with information
on businesses from around the world that specialize in disability travel..
Center for Disease Control and Treatment
(CDC)
As the Nation’s principal health statistics agency, we compile
statistical information to guide actions and policies to improve health.
The
Emory University CETT Program
(Collaboration Education and Test Translation Program)-This program
promotes the development of new genetic tests for rare diseases and facilitates
the translation of genetic tests from research labs to clinical practices.
Genetic Alliance
Genetic Alliance convenes diverse stakeholders – including disease-specific
advocacy organizations, universities, companies, government agencies, and policy
organizations – to explore and create novel partnerships in advocacy. Our
network of thousands of organizations provides an open space for shared
resources, creative tools, and dozens of timely programs. Genetic Alliance
identifies solutions to emerging problems and reduces obstacles to rapid and
effective translation of research into accessible technologies and services that
improve human health. In all we do, we integrate individual, family, and
community perspectives to improve health systems.
Histiocytosis Association of America (HAA)
The Histiocytosis Association of America is dedicated to helping
those dealing with the effects of rare histiocytic disorders by providing a
variety of educational programs and emotional support services. In addition,
the Association promotes examination of histiocytic disorders through scientific
and medical research, with the aim of establishing better treatments, a cure,
and ultimately, prevention of the diseases.
ICORD
The ICORD mission is to improve the
welfare of patients with rare diseases and their families world-wide through
better knowledge, research, care, information, education and awareness. ICORD
is an International
Society
for all individuals active in rare diseases
and/or orphan drugs, including health care, research, academic, industry,
patient organizations, regulatory authorities, health authorities, and public
policy professionals.
In Need of Diagnosis
INOD’s mission is to provide help and support for individuals
distressed with disorders that have eluded medical diagnosis and to identify and
encourage the implementation of protocols that will facilitate quicker and more
accurate diagnosis.
Joe’s House
Joe's House is an online nation-wide lodging resource for cancer
patients and their families who must travel away from home for medical
treatment. Our website lists cancer treatment centers and nearby lodging
facilities throughout the country.
MedCoach
MED COACH is a luxury coach used for long distance patient
transfer and or leisure travel with a medical companion such as a nurse or
caregiver. MedCoach offers nationwide, long distance transfers within the US.
Bedside-to-bedside transfers in a medically equipped luxury motor coach with a
medical escort can be provided.
Mercy Medical Airlift
MMA’s mission is to ensure that no needy patient is denied access to
distant specialized medical evaluation, diagnosis or treatment for lack of a
means of long-distance medical air transportation; further, to ensure the
provision of urgent transportation in situations of compelling human need and
homeland security emergencies.”
National Family Caregivers Association
The National Family Caregivers Association educates, supports, empowers
and speaks up for the more than 50 million Americans who care for loved ones
with a chronic illness or disability or the frailties of old age. NFCA reaches
across the boundaries of diagnoses, relationships and life stages to help
transform family caregivers' lives by removing barriers to health and well
being.
NFCA's core Caring Every Day messages are:
Believe in Yourself.
Protect Your Health.
Reach Out for Help.
Speak Up for Your Rights.
National Health Council
Provides a united voice for people with chronic diseases and
disabilities. They work to: (1) improve the health of all people; (2) increase
support for health research; and (3) strengthen the community of patient
advocacy organizations. This organization has a helpful publication for anyone
with a chronic condition entitled,
“How to Bring Out the Best in Your Health Care Team.
It’s your health. You call the shots.”
National Institutes of Health
NIH is the steward of medical and behavioral research for the Nation. Its
mission is science in pursuit of fundamental knowledge about the nature and
behavior of living systems and the application of that knowledge to extend
healthy life and reduce the burdens of illness and disability.
National Institutes of Health of Technology Transfer
The
NIH
Office of Technology Transfer (OTT) evaluates, protects, markets,
licenses, monitors, and manages the wide range of NIH and
FDA discoveries, inventions, and
other intellectual property as mandated by the Federal Technology Transfer Act
and related legislation.
To accomplish its mission, OTT oversees patent prosecution and negotiates and
monitors licensing agreements. OTT performs similar functions for patenting and
licensing activities for the
Food and Drug Administration (FDA),
another component of the
Department of Health and Human Services (HHS)
NIH – National Institute of Neurological Disorders and Stroke (NINDS)
The mission of NINDS is to reduce the burden of neurological
disease - a burden borne by every age group, by every segment of society, by
people all over the world.
NIH Office of Rare Diseases Research
The Office of Rare Diseases Research (ORDR) at the National Institutes of Health (NIH)
coordinates research and information on rare diseases at the NIH and for the
rare diseases community. The ORD Web site provides information for patients and
their families with rare diseases and about NIH- and ORD-sponsored biomedical
research and scientific conferences.
National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD), a non-profit
organization, is a unique federation of voluntary health organizations dedicated
to helping people with rare "orphan" diseases and assisting the organizations
that serve them. NORD is committed to the identification, treatment, and cure of
rare disorders through programs of education, advocacy, research, and service.
National Pain Foundation
This is an on-line educational and support community for persons in pain,
their families and physicians. It is a source for treatment options and pain
information that is peer reviewed by leading pain specialists.
National Patient Travel Center
The NPTC exists to facilitate patient access to appropriate
charitable medical air transportation resources in the United States. The NPTC
also exists to develop, administer and consolidate airline patient ticket
programs and to operate various Special-Lift and Child-Lift programs on behalf
of special disease organizations and/or clinical research centers in the United
States.
Operation Access
Helps provide low-income, uninsured people access to donated
outpatient surgeries and specialty care that improves their health, ability to
work and quality of life.
ORPHANET
Orphanet is a
database of information on rare diseases and orphan drugs. Its aim is to
contribute to the improvement of the diagnosis, care and treatment of patients
with rare diseases.
Patient Advocate Foundation
Solving insurance and healthcare access problems since 1966. Patient
Advocate Foundation is a national non-profit organization that seeks to
safeguard patients through effective mediation assuring access to care,
maintenance of employment and preservation of their financial stability relative
to their diagnosis of life threatening or debilitating diseases.
Partnership for Prescription Assistance
The Partnership for Prescription Assistance brings together
America’s pharmaceutical companies, doctors, other health care providers,
patient advocacy organizations and community groups to help qualifying patients
who lack prescription coverage get the medicines they need through the public or
private program that’s right for them. Many will get them free or nearly free.
Its mission is to increase awareness of patient assistance programs and boost
enrollment of those who are eligible. Through this site, the Partnership for
Prescription Assistance offers a single point of access to more than 475 public
and private patient assistance programs, including more than 180 programs
offered by pharmaceutical companies. To access the Partnership for Prescription
Assistance by phone, you can call toll-free, 1-888-4PPA-NOW (1-888-477-2669).
PatientsLikeMe
Founded in 2004 by three MIT engineers whose collective experience spans from
running the world's only non-profit biotechnology laboratory to large-scale
online commerce applications, PatientsLikeMe is a privately funded company
dedicated to making a difference in the lives of patients diagnosed with
life-changing diseases. Our personal experiences with ALS (Lou Gehrig's disease)
inspired us to create a community of patients, doctors, and organizations that
inspires, informs, and empowers individuals. We're committed to providing
patients with access to the tools, information, and experiences that they need
to take control of their disease.
PubMed
PubMed is a service of the
U.S. National Library of Medicine
that includes over 18 million citations from MEDLINE and other life science
journals for biomedical articles back to the 1950s. PubMed includes links to
full text articles and other related resources.
Rapid Access to Interventional Development
The NIH-RAID Pilot Program-This program is intended to reduce some of the
common barriers between laboratory discoveries and clinical trials for new
therapies. They provide services to approved projects through access to the
extensive NCI contract network. Its services are intended for use by academic
discovery laboratories and not-for-profit organizations. Domestic and foreign
institutions are eligible. They have money to spend and need proposals!
Resource Repository
WikiAdvocacy is a free,
reader-built guide, as well as a community for advocacy. It covers every aspect
of founding and growing an advocacy organization from fundraising to detailed
explanations of issues, skills, and the elements of creating a registry and
samples repository.
Rx Assist
Patient assistance programs are run by pharmaceutical
companies to provide free medications to people who cannot afford to buy their
medicine. RxAssist offers a comprehensive database of these patient assistance
programs, as well as practical tools, news, and articles so that health care
professionals and patients can find the information they need.
Shiatsu
Shiatsu is -like acupuncture- based on the
theory of yin/yang and the 5 elements. Knowledge and understanding of
this theory is essential to make a proper diagnose. (see also
http://en.wikipedia.org/wiki/Shiatsu)
Shiatsu Japanese
from shi, meaning finger, and atsu, meaning pressure)
is a traditional Japanese hands-on therapy based on anatomical and physiological
theory and is regulated as a licensed medical therapy with the Ministry of
Health and Welfare in Japan.
Swedish Database
The Swedish National Board of Health and
Welfare publishes a rare disease database, currently providing information about
228 rare diseases. The material is also published in English and 69 information
texts are now available in translation.
Together Rx Access
A free prescription savings program created by leading pharmaceutical
companies for U.S. and Puerto Rico citizens who do not have prescription drug
insurance and qualify based on income.
Undiagnosed Disease Program at the National
Institutes of Health
Some patients wait years for a definitive diagnosis. Using a unique combination
of scientific and medical expertise and resources at the National Institutes of
Health (NIH), the Undiagnosed Diseases Program pursues two goals:
1) To provide answers to patients with mysterious conditions that have
long eluded diagnosis
2)To advance medical knowledge about rare and common diseases
The program is trans-NIH in scope. It is organized by the National Human
Genome Research Institute (NHGRI), the NIH Office of Rare Diseases (ORD) and the
NIH Clinical Center. Many medical specialties from other NIH research centers
and institutes will contribute expertise needed to conduct the program,
including endocrinology, immunology, oncology, dermatology, dentistry,
cardiology, and genetics, which are represented among the dozens of
participating senior attending physicians who may participate in the program's
clinical research.
Any longstanding medical condition that eludes diagnosis by a referring
physician can be considered undiagnosed and may be of interest to this clinical
research program. Of the total number of cases that may be referred to this
program, a very limited number will be invited to proceed in the study at the
discretion of the program’s medical team.
United Spinal Association
This organization has a mission to improve the quality of life of all Americans
living with spinal cord injuries and disorders (SCI/D), including multiple
sclerosis, spina bifida, Lou Gehrig’s Disease (ALS), and post polio. Their
website includes free access to publications such as “Disability Etiquette”,
“Mobility Alternatives: Canes To Wheelchairs”, “Fire Safety For Wheelchair
Users”, “Understanding The ADA – Accessible Air Travel, etc.
Wikigenetics
Provides credible and up-to-date information on human genetics. It is a
web-based encyclopedia on human genetics for the public. The content is
generated by users who are allowed to view and to edit pages, frequently
geneticists as well as members of lay advocacy groups. The site was initially
created by Genetic Alliance in 2007 and has an advisory and editorial board.
Axociacion Argentina de Histiocitosis (A.A.H.) ( email: histiocitosis@hotmail.com.ar)
Histiocytosis Association Belgium
Histiocytosis Association Brazil (Email: roedel@apis.com.br)
Histiocytosis Association of Canada Canada
Association Histiocytose France
Erwachsenen-Histiozytose X e.V. Germany (see also: www.LCH-Register.org)
Histiocytosis Association Greece
Histiocytosis Association Italy
Histiocytosis Association of Japan
Histiocytosis Association of Korea
Histiocytosis Association Spain
Histiocytosis Association Sweden
Histiocytosis Association The Netherlands
Histiocytosis Association Turkey
Histiocytosis Association United Kingdom
Last updated: May 5, 2010