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The Coalition for
Pulmonary Fibrosis (CPF) is a 501(c)(3) nonprofit organization, founded in
2001 to accelerate research efforts leading to a cure for idiopathic
pulmonary fibrosis (IPF), while educating, supporting, and advocating for
the community of patients, families, and medical professionals fighting
this disease. The CPF funds
promising research into new approaches to treat and cure pulmonary
fibrosis; provides patients and families with comprehensive education
materials, resources, and hope; serves as a voice for national advocacy of
IPF issues; and works to improve awareness of IPF in the medical community
as well as the general public. The CPF's nonprofit partners include many
of the most respected medical centers and healthcare organizations in the
U.S. With more than 10,000 members nationwide, the CPF is the largest
nonprofit organization in the U.S. dedicated to advocating for those with
pulmonary fibrosis. | ||
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The Tuberous
Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis
while improving the lives of those affected. The Tuberous Sclerosis
Alliance was founded in 1974 by four mothers coming together to provide
fellowship, generate awareness, pursue more knowledge and provide hope to
those that shared the common bond of tuberous sclerosis complex (TSC).
These goals are still driving the organization today. The TS Alliance
stimulates and supports research grants, provides information and support
to individuals with TSC and their families, and educates health care
professionals about the disease. TSC is a genetic
disorder that causes tumors to form in many different organs, primarily in
the brain, eyes, heart, kidney, skin and lungs. TSC is caused by a
mutation in either the TSC1 gene on chromosome 9 or the TSC2 gene on
chromosome 16. The true prevalence of TSC is unknown, but its incidence
has recently been estimated to be 1 in 6,000 live births. This means
approximately 50,000 individuals in the United States and more than 1
million worldwide have TSC. It occurs in both sexes and in all races and
ethnic groups. More than 40% of individuals with TSC, predominantly women,
have lymphangioleiomyomatosis (LAM), which is known to be caused by
mutations in the TSC genes.
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The Children’s
Interstitial Lung Disease (chILD) Foundation was founded and established
as a not-for-profit foundation in Cincinnati, Ohio on May 20, 2004 by five
families whose children had been diagnosed under an umbrella lung disease
listed only as Interstitial Lung Disease (ILD). In just two years and in
collaboration with a working group of Doctors in what is now a chILD
Clinical Research Cooperative, several different diagnoses have been
established within chILD, to include, NEHI, ABCA3, Surfactant B & C
deficiency, and PIG. chILD syndrome has be found to effect children from
birth up to 2 years and now is under review in children from 2-18 years of
age. “The Mission of The
Children’s Interstitial Lung Disease Foundation is to provided support,
education and hope to families affected with a Children’s interstitial
lung disease and to advocate and raise funds for scientific research”.
Furthermore, to develop and provide tools and methods to the medical and
education communities to help them understand, diagnose, refer, treat and
eventually find a cure for chILD.
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The 2007
International Conference will be held May 18-23 in San Francisco,
California. The ATS is committed
to disseminating the latest advances, nationally and internationally, in
the fields of lung disease, sleep disorders and critical care medicine.
The International Conference is the Society’s most visible activity. This
annual conference has become the premier, international forum for
physicians and scientists who work in pulmonary, critical care, and sleep
medicine.
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RT is a leading
source of information for respiratory care practitioners. It provides
clinical information, updates on trends, practical insights, business
tips, and news on the latest product and services. RT covers clinical and
current health care issues via in-depth facility profiles, case reports,
and feature-length articles that address how health care issues ultimately
will affect the respiratory care field.
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Finally a respiratory
magazine devoted to all respiratory patients. This is the only respiratory
magazine created and guided by a respiratory patient. As this great country
continues to have a growing population of people over the age of 50 it is
imperative that there is a magazine that focuses on respiratory patients
needs. One that will Empower – patients to voice their concerns, Educate –
patients so that they can make the best choices for their health, and
Enrich –patients lives so that they can live life to the
fullest.
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Thank you for your continued support of ATS Public Advisory Roundtable.
Sincerely, Members of ATS Public Advisory
Roundtable
Eileen Zacharias ATS Public Advisory Roundtable email: info@ardsusa.org
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