Cystic
Fibrosis
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Norma Kennedy Plourde's
amazingly comprehensive compendium of links to all things
CF. This is a must-see !
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Cystic
Fibrosis Research Incorporated (CFRI)
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In order to alleviate the emotional
and physical suffering associated with cystic fibrosis,
CFRI's mission is to fund cystic fibrosis research and to
offer educational and support programs for people with CF
and their families. What sets us apart from other cystic
fibrosis organizations is our commitment to offering educational
and personal support to families living with cystic fibrosis.
We make ourselves available to parents of CF children and
CF adults because research has proven that knowledgeable
and informed patients maintain healthier lives.
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| The
CF Pharmacy |
The CF Pharmacy is dedicated
to research and development of a new cost-effective pharmaceutical
approach to the care and treatment of Cystic Fibrosis. The
CF Pharmacy is an independent pharmacy for patients and
families (across the United States) formed specifically
to meet the needs of CF patients. In addition to medications,
The CF Pharmacy carries a full-line of respiratory equipment
and supplies as well as nutritional supplements. Cystic-L's
own Grandmom Bev founded this pharmacy!
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Second
Wind Lung Transplant Association
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Everything you ever wanted
to know about lung transplants is found in the Second Wind
Lung Transplant Handbook!
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cysticfibrosis.com
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A Medrise.com advertising/sponsorship
supported site (Medrise.com is a subsidiary of M.L. Burke
Consulting, Inc.) for the use of people with cystic fibrosis.
Forums for Adults, Families, Young People and Teens.
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Cystic
Fibrosis Resource Centre
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This UK web site has been produced
by Solvay Healthcare Ltd., and is designed to offer advice
and guidance to cystic fibrosis patients, parents, doctors
and other carers. Resources and information are provided
which will hopefully help you in resolving problems and
coping better with cystic fibrosis on a daily basis.
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A
Message From Above
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A personal page dedicated to
the memory of Holly Kay Mattke-Wheelock and Heather Kay
Mattke, and to families who have lost a loved one to CF,
and to the families who have lost a loved one who was waiting
for an organ transplant.
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Utah
Valley Institute of Cystic Fibrosis
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The Utah Valley Institute of
Cystic Fibrosis was organized in January 1999. The site
contains much information about the inhalation of GSH (glutathione).
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Cystic
Fibrosis
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An unusually well-designed
personal page containing CF information, featuring a "Coping"
page particularly useful to those who live in New Jersey.
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Federación
Española contra la Fibrosis Quística
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A non-profit organization providing
information about CF in Spanish, French and Portugaise.
Information about the Federación Española
contra la Fibrosis Quística. Information about grants.
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Sandy's
Cystic Fibrosis Page
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Information about CF and links
to other CF pages.
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My
Life With Cystic Fibrosis
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A cute personal page about
Lily, providing one little girl's thoughts on Cystic Fibrosis,
"in her own words." |
| How
to Handle Living With Cystic Fibrosis |
A personal web site designed
for teenagers and young adults who have cystic fibrosis,
though anyone is welcomed to read it! This web-site contains
helpful hints for living with CF. All stories and suggestions
are based on the author's (a pwcf) own experience and/or
opinion. |
Canadian
Cystic Fibrosis Foundation
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Official web site of the CCFF.
Find copies of excellent CCFF publications about CF, research
updates, lists of CF treatment clinics/centers, and more.
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Living
with Cystic Fibrosis
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A personal site with CF research,
links, and memorials to some that we have lost to this disease.
Also a picture showing what a Mic-Key G-TUBE looks like
for feeding tubes. |
A
Living Miracle
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Personal web site designed
by Donald Shores in honor of his mother Katherine Shores
of Aulander, North Carolina. She is the oldest living cystic
fibrosis patient in the United States. |
Camp
Funshine
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Camp Funshine is a summer camp
for people with Cystic Fibrosis. |
Jake's
Page
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A personal web page about CF.
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Cystic
Fibrosis Victoria
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Information on Cystic Fibrosis
Victoria, the organization and how it helps Victorians with
CF. Also information on CF, the 65 Roses Newsletter and
Online Shop (goods shipped within Australia only). |
Mukowiscydoza
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Najwiekszy SERWIS poswiecony
mukowiscydozie. Informacje o sposobie rozpoznawania choroby,
rehabilitacji, najnowszych osiagnieciach naukowych, postepach
w leczeniu. Na stronie tak¿e dane o stowarzyszeniach,
sympozjach i literaturze fachowej. |
Genevieve's
Cystic Fibrosis Site
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Genevieve lives in Australia,
talks about her personal experiences with CF, and offers
alternatives to treatment other than antibiotics. |
CFparents
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Mailing list focusing on the
problems and needs of parents raising kids with CF. This
is a SECULAR list. |
The
Compassionate Friends
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The Compassionate Friends is
a national nonprofit, self-help support organization that
offers friendship and understanding to bereaved parents,
grandparents and siblings. There are no religious affiliation
and no membership dues or fees. |
Blackbird
Productions
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Blackbird Productions provides
affordable interactive dinner theatre murder mysteries and
donates a portion of the profits from each show to CF. |
Iditarod
2003 - Mush On For Cystic Fibrosis
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This is a developing site by
a husband and wife team who's going to race the 2002 Ididarod
sled dog race in Alaska to raise money for CF. They don't
have any kids with cf, if fact they didn't even know anyone
with cf when they started this endeavor. They just read
about cf and said, "Hey we need to help in this cause".
Take a look and see how you can support their efforts. |
The
Dreamsurfer Network
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The principal component of
the Dreamsurfer Network is the Dreamsurfer Central Web site
which is open to people ages 8-18 suffering from a life-threatening
illness. At the Web site, people can participate in activities
such as moderated chats, multi-player games, discussion
topics, message boards, and locating information in the
site library. Currently, the majority of the people participating
in the Web site have Cystic Fibrosis. To join, click the
link that says "The Dreamsurfer Network" in red
on this page, then click "Contact Us" and fill
out the form. You'll be mailed an application.
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Information on Selected Aspects of Cystic Fibrosis
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This page contains information on diabetes, hemoptysis, nasal polyps,
reducing lung congestion, tea tree oil, and magnesium. |
KidsTouchedByCF
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KidsTouchedByCF is a moderated/restricted
list for children with Cystic Fibrosis or for siblings of
children with Cystic Fibrosis. The list is not open to adults,
except for adult moderators.
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MyCysticFibrosis
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MyCysticFibrosis.com is provided
by Protocol Driven Healthcare, Inc. with a grant from Solvay
Pharmaceuticals, Inc. On the site users will find a personal
interactive diary for recording health information, including
lung function and dietary information. Members, parents
and or caregivers can easily review progress and symptoms
with specially designed charts and graphs. |
America's
Challenge Foundation
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The Cystic Fibrosis program
was adopted and is sponsored by America's Challenge Foundation
and was established in September of 1999. To assure and
provide financial support to children and their that do
not have the financial resources to properly maintain adequate
care that is required to; pay doctor, hospital, travel,
lodging, and pharmaceutical expenses to improve the quality
of life for those with CF disease. While other Cystic Fibrosis
Foundations are focusing on funds for research and the prevention
of Cystic Fibrosis, America's Challenge is assisting the
patient and the parent's in their day to day existence.
NOTE: THE LEGITIMACY OF THIS ORGANIZATION HAS NOT BEEN
CONFIRMED BY MEMBERS OF CYSTIC-L.
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SHOP4CF
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A service established by Mel
Kotlyar, a young man with CF, to raise money for the CFF
at no extra cost to buyers! Shop at 1400 major stores such
as Nordstrom’s, Dell, the Good Guys and many others.
When you shop online they will donate a portion of the spending
back to the CF Foundation for research and other programs
to benefit the cause. Why not purchase what you already
buy but do it online and have it quickly and safely delivered
to your home or office and help support CF kids and adults
all in one? Imagine buying groceries and having it help
find a cure for CF!
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Sevier
County Chapter of Cystic Fibrosis
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The Sevier County Chapter of
the Cystic Fibrosis Foundation was formed in 2000. The effort
was led by Jim Deanda and Barbara Gray who have two children
with Cystic Fibrosis, Callie, age 5 and Cale, age 3. In
2001, with the help of over 25 volunteers, the chapter raised
$25,000. This was used for research to find a cure.
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Lucy's
Page
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This page started out as a
CF fundraiser and has grown to provide information as well
as Lucy's story about her late diagnosis.
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Cochrane
Cystic Fibrosis & Genetic Disorders Review Group
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We are a non-profit making
organisation made up of an international network of health
care professionals, researchers and consumers. We prepare,
maintain and distribute systematic reviews of randomised
control trials of treatment and interventions for cystic
fibrosis. If you would like to know how you can benefit
from and contribute to our work, take a look at our web
site - see you there soon!!
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Dedicated
to a Princess
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A site dedicated to my wife,
soul mate, and best friend Kate McCloughan who ended her
battle with CF on 01/25/02.
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My
Sunshine
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"Gone To The House On
The Highest Hill" - A true life story about a 12 year
old boy named Chuck, and his battle with Cystic Fibrosis.
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| The
Milan Foundation |
Milan Foundation is dedicated
to helping families manage the day-to-day needs of people
with CF. Our goal is to provide assistance with the costs
associated with medications and equipment. We also will
help where we can with other needs such as transportation
or general financial needs. The foundation is also very
dedicated to raising awareness through fundraiser's and
talking to the media in hopes of getting stories in print
and broadcast.
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Cystic
Fibrosis Worldwide
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Cystic Fibrosis Worldwide works
to promote access to appropriate care and education to those
people living with the disease in developing countries and
to improve the knowledge of CF among medical professionals
and governments worldwide.
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CF
Solutions, Inc.
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CF Solutions is a 501(c)(3)
not-for-profit cystic fibrosis pharmacy providing medications,
home IV therapy, nutritional supplements, medical &
supplies as well as pulmonary rehab to Oklahoma CF patients
regardless of their ability to pay. They also have a CF
Pulmonary Rehab Center.
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Transplant
Support- Lung, Heart/Lung, Heart
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We are not alone in our endeavor.
If you are pre transplant, or post transplant, or a family
member or a friend, you will find this web site informational,
helpful and a place to connect to others. Share your thoughts,
feelings, experiences, future plans and how your transplant
has changed your life. Check the news out and see what the
future looks like for us as far as therapies, medicine.
Great links to other transplant sites, lung illness sites
and heart illness sites. Want to read a book? Listed are
books of interest and a great way to learn more. Organ Donation
is one of my personal objectives, to get the word out and
to promote it.
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Alex
Detore's Web Site
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Alex is an 8 year old boy who
was diagnosed with CF at 7 years old. He has also been battling
medulloblastoma, a malignant type of brain tumor since the
age of 4. This is his story.
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STARBRIGHT
Family Room
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The STARBRIGHT Family Room
is an online community that provides information and support
to help families care for their seriously ill child. The
site features practical tips, daily solutions, and inspiring
personal stories from other parents who have "been
there."
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Alice
Martineau Remembrance Site
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Alice Martineau was a singer/songwriter
who had cystic fibrosis. Despite needing a heart lung and
liver transplant, and being unable to travel further than
two hours from London, Alice was able to overcome the difficulties
of getting signed up and went on to release an album under
Sony. Alice has also appeared in a BBC documentary, "The
Nine Lives of Alice Martineau."
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New Jersey State Organization of Cystic Fibrosis
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NJSOCF is a not-for-profit organization that uses its donated dollars to purchase the daily necessities of living for patients with the disease. These include prescription drugs, medical equipment, nutritional supplements and extra nutritious foods. Services are available to patients from birth to adulthood. Adult patients receive services through a special state-funded program specifically for adults with cystic fibrosis.
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United States Adult Cystic Fibrosis Association
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United States Adult Cystic Fibrosis Association (USACFA) is the publisher of CF Roundtable - the newsletter for adults who have CF.
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Cystic Fibrosis
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A commercial site with information about cystic fibrosis.
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PWCF Net
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A site in the United Kingdom "for people with cystic fibrosis, made by people with cystic fibrosis."
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The Reach for the Stars Foundation
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The Reach for the Stars Foundation is devoted to alleviating
the myriad of devastating consequences suffered by the CF afflicted and their families. Our objective is to enhance their quality-of-life, now, so that they will be healthy enough to be the beneficiaries of on going research and medication advancements. Ultimately, our ambition is to see them live long enough, so that they will be able to see a cure for this
devastating disease.
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Beautiful Beginnings Youth Inc.
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The home of Beautiful Beginnings Youth Inc. and the Tales of Madison Faith series of children's books. "With vision and hope, we forge ahead to create awareness and raise research dollars for a cause that is very near and dear to our hearts, cystic fibrosis." |
The Dream Foundation
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The mission of the Dream Foundation is to enhance the quality of life for individuals and families battling terminal illnesses. The Dream Foundation is the first national wish-granting organization for adults over the age of 18.
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Child of Life.com
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This website is the celebration of the life of Joseph Arthur Lopez, an energetic 3 year old living with Cystic Fibrosis. Includes a 10 minute video describing a couple's experiance with their child with cystic fibrosis and the creation of a song about him.
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Fertility, Pregnancy, Childbirth, Breastfeeding and Health for Adults with CF
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This website is dedicated to the dispensing of accurate, current information regarding fertility, pregnancy, childbirth and breastfeeding for women and men with Cystic Fibrosis.
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Faith & Awareness
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This site is about Jeff Jergensen's family, his boys with CF, their faith, and to raise awareness about CF
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Fertility, Pregnancy, Childbirth, Breastfeeding and Health for Adults with CF
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This website is dedicated to the dispensing of accurate, current information regarding fertility, pregnancy, childbirth and breastfeeding for women and men with Cystic Fibrosis.
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Run for Cystic Fibrosis
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NYC Marathon Runner Christopher Costa is running the 26.2 miles to raise money for Cystic Fibrosis. Information, including how to donate, is provided.
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