Friday, April 17 from 6-9 p.m. at Bayfront Health St. Petersburg, Sheen Conference Center
All Children's Hospital is a Cystic Fibrosis Foundation accredited care center. Caring for more than 170 pediatric patients the Cystic Fibrosis Center provides comprehensive services, ranging from evaluation and diagnosis to treatment and patient education. Because Cystic Fibrosis (CF) is a complex disease that affects so many parts of the body, proper care requires specialized knowledge. ACH CF Center is staffed by a dedicated multidisciplinary team. The CF team at the ACH CF Center works with each individual who has CF to meet that person's specific needs and to keep them as healthy as possible. This center provides CF care, including nutrition, pulmonary care and gastroenterology support, as well as psychosocial specialties for children (newborn to age 18) with CF.
The ACH CF Center also participates in CF clinical research, which plays a critical role in developing new therapies and educating medical professionals about CF and the care people living with the disease require. Data from people with CF is collected in a national patient registry, which serves as a rich resource for your CF health care provider and CF researchers. The latest potential treatments for CF are being tested in clinical trials at many CF Foundation-accredited care centers. Patients can help by volunteering to participate in a clinical trial that will help to advance research for a cure.
The CF Center provides comprehensive care, including:
The ACH Pediatric CF Center provides personalized care and support to our patients and families through a team approach. The Pediatric Pulmonologists, Jeffrey Ewig MD, Magdalen Gondor MD, Seifu Demissie MD, Tony Kriseman MD, Maria Bolongna, ARNP and Allyson Casey, ARNP from Pediatric Pulmonary Associates, P.A. are the lead clinicians for the ACH CF Center. Dr. Gondor has been the medical director of the ACH CF Center since 2003. Patients are seen in outpatient clinics in St. Petersburg, Sarasota and Tampa, Florida. The CF clinicians are active principal investigators for CF research clinical trials. The clinicians participate in professional and community organizations relating to pediatric pulmonary disorders. The physicians provide educational lectures at seminars, support groups and conferences.
Coordinates the Florida Newborn Screen Program for CF at the ACH CF Center.
Provides consultations for CF patients while in the hospital.
Provides education to respiratory caregivers and nursing staff and consultations for inpatients.
Assist Principal Investigator with implementing research studies, including but not limited to informed consent, maintaining confidentiality, adhering to government, human subject's protection, protocol regulations and good clinical practice.
Provides support and education to the team in areas of family dynamics, clear communication and group process.
Help siblings understand and deal with the impact on illness on their family.
Assist with telephone triage, medication refills, and correspondence for patients to insurance providers, schools, employers, etc. Completes prior authorizations for medications, etc.
Information and educational resources are provided for parents to aid school communication and awareness, and to help parents advocate for their child's needs. Information is provided on alternative education when appropriate (e.g., online classes, home schooling, GED, or vocational rehabilitation programs) and for transition to college.
Provides nursing care to CF patients at the St. Petersburg outpatient clinics
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