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Sui Nou hou senn i shou: CF toyu byoki wo gozonjidesuka?
(Cystic Fibrosis: Are you Aware of this Illness?)
Brochure in Japanese:
http://www.cfww.org/docs/2010/cfjpamph.pdf
Contents:
1) What is cystic fibrosis- salt defect, plugging of airways
2) Who carries the gene- 1 in 2500 Caucasians but one in 350,000 Japanese
3) How is the gene passed on (recessive inheritance)
4) I believe this is about the life expectancy/prognosis
5) What are the treatments for CF and what are the symptoms?
6) What do you do if your child has CF- contact info for the Committee and Japan CF Network Website
Sponsored by the Committee to Enable CF Treatment
We thank Isabel Stenzel Byrnes for providing this brochure.
Isabel is co-author of "The Power of Two: A Twin Triumph over Cystic Fibrosis"
Related articles:
Living With CF From a Cultural Perspective
Cystic Fibrosis in Japan |
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CysticLife
CysticLife.org is a social network specifically made for people with CF, their families and their friends. Members can post blogs, ask questions, maintain a profile, search the member database and contact others.
Join CysticLife.org and help spread the word about this incredible new resource.
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US citizens Survey
Do you or someone close to you (friends/family/etc) have cystic fibrosis? Are you interested in helping create awareness about CF treatments and helping others understand the treatment needs for patients, and caregivers?
If so, we'd like to invite you to participate in a survey. Eligible participants will receive $25 upon completing the anonymous survey.
You can participate by clicking on the link below:
http://t2.ktrmr.com/surveyh.aspx?i.project=FFX34&s=GEN25&id=1&chk=na&pid=auto
Completed surveys must be received by December 29, 2009.
Cystic Fibrosis Research, Inc.
www.cfri.org |
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Walter van Praag's CF books and documentary
Coughing the Distance with Cystic Fibrosis DVD documentary by Lucas Li
http://amzn.com/B002FB63C6
Coughing the Distance: Paris to Istanbul with Cystic Fibrosis by Jonas Jacob Walter van Praag
http://amzn.com/0980592011
Walter and the Mucous Monsters: A tale of adventure and Cystic Fibrosis by Katherine Hitch
http://amzn.com/1442185015 |
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CF-community Austria
Site for CF-parents and patients to exchange their experiences and to
keep in Connection. |
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United States Adult Cystic Fibrosis Association
USACFA was formed to provide a source of information and education for adults who have CF - regarding the basis, nature and progression of CF, the latest treatments and research to fight CF, and to assist in the psycho-social aspects of coping with CF on a day-to-day basis. USACFA provides a network and a forum for communication among adults who have CF, their families and medical professionals. |
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Norma Kennedy Plourde's Site
Cystic Fibrosis Information, with over 2,000 links, a very good resource for CF information on the internet. |
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Jerry Cahill's CF Podcast
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Janka Penther's Blog
Read about the travels of an adventurous 23-year-old German CF girl.
This time, she will got to Worcester, South Africa, where she will do some voluntary work for three months. |
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Japan CF Network
Contact Person: Tomoaki Adachi, Ph.D.
Title: Manager of public relations
Email: adachi@mgu.ac.jp
Address: Department of Developmental and Clinical Studies, Miyagi Gakuin Women's University, 9-1-1, Sakuragaoka, Aobaku, Sendai 981-8557, Japan
Tel: +81-22-277-6194
Fax: +81-22-277-6195
Mission Statement: Because of the extremely low incidence of cystic fibrosis in our country, we have not had a chance to meet each other. We would like to try to improve the quality of medical care of CF and advance the well-being of the patients and their families through activities of our association. |
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Fibrosicisticaitalia.it
Sito dedicato alla Fibrosi Cistica con il primo Forum italiano dove genitori e pazienti si incontrano dall'anno 2000. |
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European Cystic Fibrosis Society
The ECFS aims to achieve the best possible treatment and the highest quality of life for the patient with cystic fibrosis by the development and distribution of knowledge in the field of cystic fibrosis. |
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DailyStrength
A new online support group called DailyStrength could be of considerable interest to people with CF. It offers help and support for over 500 conditions ranging from brain cancer to parenting a toddler and everything in between. The CF "community" is listed right in the middle of the home page. DailyStrength support communities are anonymous and free. They offer safe and secure forums for people who share a health issue or life challenge and enable people to find and support each other. There are helpful medical advisors on the site who answer members' health-related questions and their treatments section is an amazing resource for finding people who are using a treatment to ask for feedback of their experience. |
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Cystic Fibrosis Medicine
Cystic Fibrosis Medicine contains a large collection of articles on cystic fibrosis as well as cf related links, two forums, a chat room and a drug database. |
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CF Care Fund
The CF Care Fund is a new charity that works with doctors and other health professionals to assist CF patients whose financial needs prevent them from obtaining the care they need. Our ultimate mission is to help every CF patient receive optimum care, regardless of the patient's age, income levelor place of residence.
Founded in 2005, we are devoting our early years to working in partnership with several CF centers on the East Coast of the United States; our goal is to develop a model for serving patients that we can expand worldwide.
We are currently seeking photos of CF patients for our new website, and would especially appreciate a cross section of race, age and gender. If you would like to share your photo, please log onto www.cfcarefund.org and follow the link entitled "share photos." Please contact Ellen Arian for more information: ellen18@verizon.net |
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Cystic Fibrosis Online Support Group
A community of patients, family members and friends dedicated to dealing with Cystic Fibrosis, together. |
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Cystic Fibrosis Research, Inc.
News about CF research. |
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Cochrane Cystic Fibrosis Genetic Disorders Group
We are part of The Cochrane Collaboration - an international network of health care professionals, researchers and consumers preparing, maintaining, and disseminating systematic reviews of randomised control trials. Our group specialises in reviews of the treatment of cystic fibrosis and other genetic disorders. |
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Yummy Nummies For CF Tummies
A site for CF Mum's to take some of the guess work out of feeding. |
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Adult Cystic Fibrosis Committee of Quebec (ACFCQ)
The site houses a non-profit community organization whose primary mission is to improve quality of life for persons with cystic fibrosis in Quebec and for their spouses, relatives, friends and caregivers. The purpose of the information on the site is to foster independence in its members and to help promote, defend and protect their rights and interests. |
