Medical Care

Treatment Centers

CF Center: Medical care for the CF community in the area served by CFFC is coordinated by the Cystic Fibrosis Center at the University of Rochester Medical Center.

Pediatric care:

  • Clinic – The pediatric patient clinic is located at the CF Center in Golisano Children’s Hospital
  • In-patient – Hospital care for pediatric patients is delivered at Golisano Children’s Hospital

Adult care:

  • Clinic – The adult patient clinic is located at the Complex Care Center
  • In-patient – Hospital care for adult patients is delivered at Highland Hospital

CF Center Locations – The Cystic Fibrosis Foundation (CFF) has an accreditation program for care centers across the United States.  The location of these CF centers can be found on the CF Foundation site.

Medical Issues

CFF Patient Assistance Resource Center – The CF Foundation created a network of resources to help make the most of healthcare coverage, decide on coverage that’s right for you or to find programs that can help you pay for treatment.

  • Patient Assistance Resource Library -To help navigate the complex world of health insurance and healthcare coverage, the Patient Assistance Resource Library offers a range of useful information, including: sample letters of medical necessity and prior authorization; how-to guides to navigating common insurance obstacles; templates for insurance appeals, exceptions and reconsiderations; CF care guidelines; evidence-based medical journal articles; and white papers for medical professionals. Check for reports on updates to this site.

Health guides for adolescent and young adult women with CF – The Boston CF Center and Center for Young Women’s Health at Boston Children’s Hospital developed sexual and reproductive health guides for young women with CF.

Respiratory/Lungs – The CFF produced a series of Web casts dealing with issues associated with pulmonary function including lung transplantation, sinus disease, chronic medications, airway clearance, exercise and second-hand smoke.

An-Introduction-to-Postural-Drainage-and-Pecussion-03-2012 – CFF-produced PDF fact sheet. Postural Drainage and Percussion (PD & P), also known as chest physical therapy (CPT), is a way to help people with cystic fibrosis (CF) breathe with less difficulty and stay healthy. PD & P is easy to do using the techniques described here.

Lung Transplantation

Our Lung Transplant Story – A story of the journey through lung transplantation written by a member of our Rochester/Finger Lakes CF community.

Cystic Fibrosis Trust (the equivalent of Cystic Fibrosis Foundation in the United Kingdom) published three comprehensive booklets on lung and other organ transplants geared to different audiences. The links below will open the booklets in your default PDF reader.

For people living with CF: Cystic fibrosis and transplant booklet 2018

For partners and family: Transplant information for partners and families 2018

For parents of children with CF: Transplant information for parents 2018

Gene Therapy

Gene editing: The American Society of Gene & Cell Therapy issued a white paper which provides information regarding therapeutic gene editing in layman’s terms. You can read this white paper here: TherapeuticGeneEditingWP_Nov21_v1

Gene editing & stem cells – The Journal of Cystic Fibrosis published an article providing background on gene editing and the use of stem cells, including legal and ethical issues. The target audience is medical professionals, so the article may be a little dense for some readers.

Anxiety and Depression – Mental health is a critical aspect of care in CF. CFF has published a series of resources to help caregivers deal with anxiety and depression.

Coping While Caring for Someone With Cystic Fibrosis – Guidance for dealing with anxiety and depression experienced by care givers.

Depression and CF – Guidance to caregivers for dealing with depression in a child with CF.

Anxiety and CF – Guidance to caregivers for dealing with anxiety in a child with CF

CF-and-Mental-Health – A two-page guide for building resilience in caregivers.

Depression-Anxiety-and-Cystic-Fibrosis-What-the-Guidelines-Mean-for-You – A two-page guide for CF care teams for assessing and treating anxiety and depression.

Infection Control:

CFFC and Infection Prevention – Our position statement regarding infection prevention at CFFC-sponsored events.

CF Foundation – On March 27, 2013, the CFF produced a web cast to present information underlying their update policy regarding infection prevention and control. The panel also answered questions submitted prior to and during the Web cast. [NOTE: The web cast is no longer available; the link now downloads a PDF of the web cast slides.]

Kit Taylor Lecture – On March 25, 2014, Dr. John LiPuma presented “Infection Prevention in CF” at the 34th Kit Taylor Lecture. Dr. LiPuma, who was a member of the committee that developed the revised CFF guidelines, provided background on the guideline development process including an explanation of the medical data considered by the committee.

Medicines

CF Services – CF Services, a wholly owned subsidiary of the CFF, is a specialty pharmacy specializing in CF medications, patient advocacy and reimbursement support.

Foundation Care – Foundation Care has developed an expertise in the medication management and total treatment of CF patients.

CF Pharmacist – As part of its CF Discovery Series, CFRI has published a video entitled “Your CF Pharmacist: A Critical Member of the Healthcare Team” which deals various aspects of an often overlooked member of the CF care team.

Research

CFF Webcasts – The CFF has produced a series of Webcasts relating to CF research including a 2012 research update, aspects of clinical trials and the drug development pipeline.

CFRI – Cystic Fibrosis Research, Inc. exists to fund research, to provide educational and personal support, and to spread awareness of cystic fibrosis.

CF Discovery Series – Archive of CFRI webcasts on a wide variety of topics covering all aspects of living with CF.

CFUnited – Based in the United Kingdom, Cystic Fibrosis Unite aims to bridge the gap between people with CF and the researchers investigating CF and how best to treat those with the condition. CFUnite has been created by people with CF, parents of children with CF, researchers and clinicians.

Clinical Trial Finder – This CFF tool makes it easier than ever to find trials by location, mutation, age and more — as well as contact research coordinators about a specific study from within the tool.

Drug Development Pipeline – This CFF tool clearly and quickly shows what phase each drug is in, including pre-clinical development programs.