Cystic Fibrosis (cont.)
Recent research has focused on treating the cause as well as the symptoms of cystic fibrosis. Medical researchers are currently looking at gene transfer therapy, which tries to correct the result of the gene defect that causes cystic fibrosis. Gene transfer therapy involves introducing healthy genes into the lung cells of people who have cystic fibrosis.
Researchers are also investigating protein repair therapy, or protein assist therapy. This therapy involves taking medicines that help the defective protein work more normally to allow a small amount of salt and water to move out of cells.
Gene transfer and protein repair therapies are in the experimental, developmental stages; and clinical trials are being conducted. For more information, see the Other Places to Get Help section of this topic for organizations to contact.
Other Places To Get Help
|Cystic Fibrosis Foundation|
|6931 Arlington Road|
|Bethesda, MD 20814|
|Phone: ||1-800-FIGHT CF (1-800-344-4823)|
|Fax: ||(301) 951-6378|
|Web Address: ||www.cff.org|
The CFF coordinates, supports, and accredits cystic fibrosis centers and programs, supports research, and advocates for patients. You can find information about things like treatment, care centers, clinical trials, and staying healthy. You can also buy medicines from the online pharmacy.
|Genetics Home Reference, U.S. National Library of Medicine|
|8600 Rockville Pike|
|Bethesda, MD 20894|
|Phone: ||1-888-FIND-NLM (1-888-346-3656)|
|Fax: ||(301) 402-1384|
|Web Address: ||www.ghr.nlm.nih.gov|
The Genetics Home Reference provides information on hundreds of genetic conditions. The website has many tools for learning about human genetics and the way genetic changes can cause disease. It also has links to additional resources for people who have genetic conditions and for their families.
|KidsHealth for Parents, Children, and Teens|
|10140 Centurion Parkway North|
|Jacksonville, FL 32256|
|Phone: ||(904) 697-4100|
|Fax: ||(904) 697-4220|
|Web Address: ||www.kidshealth.org|
This website is sponsored by the Nemours Foundation. It has a wide range of information about children's health, from allergies and diseases to normal growth and development (birth to adolescence). This website offers separate areas for kids, teens, and parents, each providing age-appropriate information that the child or parent can understand. You can sign up to get weekly emails about your area of interest.
|March of Dimes|
|1275 Mamaroneck Avenue|
|White Plains, NY 10605|
|Phone: ||(914) 997-4488|
|Web Address: ||www.marchofdimes.com|
The March of Dimes tries to improve the health of babies by preventing birth defects, premature birth, and early death. March of Dimes supports research, community services, education, and advocacy to save babies' lives. The organization's website has information on premature birth, birth defects, birth defects testing, pregnancy, and prenatal care.
|National Heart, Lung, and Blood Institute (NHLBI)|
|P.O. Box 30105|
|Bethesda, MD 20824-0105|
|Phone: ||(301) 592-8573|
|Fax: ||(240) 629-3246|
|TDD: ||(240) 629-3255|
|Web Address: ||www.nhlbi.nih.gov|
The U.S. National Heart, Lung, and Blood Institute (NHLBI) information center offers information and publications about preventing and treating:
- Diseases affecting the heart and circulation, such as heart attacks, high cholesterol, high blood pressure, peripheral artery disease, and heart problems present at birth (congenital heart diseases).
- Diseases that affect the lungs, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema, sleep apnea, and pneumonia.
- Diseases that affect the blood, such as anemia, hemochromatosis, hemophilia, thalassemia, and von Willebrand disease.
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