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• Patient and Family Support Links
CF Services, Inc. - a subsidiary of the Cystic Fibrosis Foundation is a national pharmacy that specializes in providing medications to individuals with cystic fibrosis (CF). Since 1988, CF Services has ensured the availability of CF medications to the CF community at the lowest possible cost. www.cfservicespharmacy.com
National Cystic Fibrosis Foundation - The mission of the Cystic Fibrosis Foundation is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. www.cff.org
National Cystic Fibrosis Awareness Committee (NCFAC) – serves in advancing community awareness of CF. www.cfawareness.org
Boomer Esiason Foundation - This site includes detailed information about the Boomer Esiason Foundation and in depth resources for cystic fibrosis information exchange. Working together, we will cure it fast. www.esiason.org
Cystic-L – a free email service dedicated to the exchange of information and support specific to cystic fibrosis. www.cystic-L.org
Cystic Fibrosis Research, Inc. - CFI's mission is to fund cystic fibrosis research and to offer educational and support programs in a safe and healthy environment. http://www.cfri.org/home.htm
Mycysticfibrosis.com - is a free resource for people living with cystic fibrosis (CF). This site contains personal management tools to help track important health measures on a daily basis. http://www.mycysticfibrosis.com
Brave Kids - A site for kids and their families that are dealing with chronic illnesses. http://www.bravekids.org/
Chiron Corporation – information on Tobramycin for inhalation (TOBI®). www.abouttobi.com
Genentech, Inc. – you will find a wealth of information about cystic fibrosis, its symptoms, and its treatment, and about Pulmozyme® (dornase alfa) Inhalation Solution. www.pulmozyme.com
Hill-Rom – offers information on The Vest System airway clearance device at www.thevest.com
Axcan Pharma – information on Ultrase pancreatic enzymes, ADEK vitamin, Scandical, Scandishake supplements, Flutter device, and patient care programs and education material. www.axcanscandipharm.com
Solvay Pharmaceuticals – information on Creon pancreatic enzymes. www.solvaypharmaceuticals.com
Digestive Care, Inc. - Pancreacarb enzymes including educational literature and patient assistance programs. http://www.digestivecare.com/
Source CF – a comprehensive line of products for CF. http://www.sourcecf.com/
The Parent Advocacy Coalition for Education Rights (PACER) Center is staffed by parents of children with disabilities and works in coalition with 18 disability organizations and may have information or advice on accommodations in school. www.pacer.org or call (952) 838-9000
The National Association of School Nurses has position statements published on their website regarding administration of medication in the school setting, including student self-administration. www.nasn.org/positions/positions.htm
Programs for Children with Disabilities Ages 3-5: Preschool Programs, Special Education Department of Education (501) 682-4225
Programs for Children with Special Healthcare Needs: Children’s Medical Services Department of Human Services (501) 682-2277
Programs for Infants and Toddlers with Disabilities Ages Birth –2: Division of Developmental Disabilities Services Department of Human Services (501) 682-8676
Protection and Advocacy Agency Disability Rights Center (501) 296-1775 (V/TTY) (800) 482-1174 (V/TTY)
CF Life – (800) 296-1542
Commitment - CF Foundation newsletter www.cff.org
Homeline - CF Services Pharmacy newsletter www.cfservicespharmacy.com/homeline_newsletter/
IACFA Newsletter - for adults with CF www.iacfa.org
Patient and Family Support Links
International Cystic Fibrosis Support Group - Purpose is to disseminate information concerning Cystic Fibrosis, give support to those involved with the disease, provide a forum for the discussion of topics relative to Cystic Fibrosis, give the members the opportunity to have an exchange of their ideas and interests not directly related to Cystic Fibrosis, and to provide contact with others who have or have an interest in Cystic Fibrosis. 1) http://camel2.conncoll.edu/non-profit/cf/
CFParents - This is a place to discuss issues specific to raising children who have been diagnosed with cystic fibrosis... a place for parents of children with CF to come for support and information. http://www.cfparents.org/
Brave Kids - Help for children with chronic, life-threatening illnesses or disabilities. http://www.bravekids.org/
Reaching Out Foundation, Inc. - is sensitive to the needs of patients and families with Cystic Fibrosis and provides financial and educational resources to assist them. http://www.reachingoutfoundation.org/pages/
Parents Helping Parents, Inc. - the family resource center - http://www.php.com/
Kids Touched by CF - is a moderated/restricted list for children with Cystic Fibrosis or for siblings of children with Cystic Fibrosis. The list is designed for support for the kids who have a personal connection to CF. http://health.groups.yahoo.com/group/KidsTouchedByCF/
STARBRIGHT Foundation - dedicated to the development of projects that empower seriously ill children to combat the medical and emotional challenges they face on a daily basis. www.starbright.org
CFKIDS – is a place for kids with CF and their families and friends. http://www.cfkids.org/
PatchWorx -is a fun and secure on-line community that breaks down the barriers of isolation, offering a warm and friendly environment for children facing illness and disability. http://www.patchworx.org/
PBS KIDS -provides games, stories, music, coloring, and other fun and educational content for kids. http://pbskids.org/
Encourage Online - is a place for teens with chronic illness and their family and friends to talk, connect and have fun with someone who understands! http://www.encourageonline.org/
FDA Kid's Home Page - web page for kids- http://www.fda.gov/oc/opacom/kids/default.htm
KidsHealth for Kids - living with cystic fibrosis - http://kidshealth.org/kid/health_problems/heart/cystic_fibrosis.html
TeensHealth - http://www.kidshealth.org/teen/diseases_conditions/digestive/cystic_fibrosis.html
The Cystic Fibrosis Gene Game - http://204.244.141.13/writ_den/t04/direct.htm
DISCLAIMER: The links provided are for informational purposes only. Their presence on this page implies no explicit or implicit endorsement of any firm or the goods/services they provide.
University of Arkansas for Medical Sciences Department of Pediatrics Section of Pediatric Pulmonology Arkansas Children's Hospital 800 Marshall Street Little Rock, AR 72202 Send Comments |
