Cystic Fibrosis (CF) is one of the most common genetic (inherited) diseases in America. It is also one of the most serious. It mainly affects the lungs and the digestive systems in the body, causing breathing problems and problems digesting foods. It is a chronic disease that currently has no cure.
The CF Center at Stanford is an integrated disease management program that follows patients from diagnosis through adulthood.
With the current longer life expectancy for patients with Cystic Fibrosis, our clinic population includes patients of all ages. More than half the patients followed by the Stanford CF Center are adults aged 18 years or older.
SAVE THE DATE
CF Education Day
March 16, 2019
Pediatric Clinic News
Do you drive away from clinic thinking, "oh no, I forgot to ask a question?" You can now fill out this form ahead of time and bring it to your clinic appointment. This form is designed to help you get all your questions answered. This is not mandatory, but a tool to assist you in jogging your memory in preparation for your clinic visit.
Did you know that you can get assistance with your PG&E bill? All you need to do is visit the website, print and complete the form with all your medical devices listed. Then bring your form to your next CF clinic visit, and your provider will sign it. Finally, mail the completed form to PG&E.
CF and Dental Health
Oral hygiene (caring for your teeth and gums) can impact CF health. Here are some guidelines and tips for how to teach and encourage your children to practice good habits to stay happy and healthy.
Adult Clinic News
Adult Support Group
CF Caregivers Support Group
Group Meets Third Tuesday of Every Month.
Two Groups to Choose from:
Parents of children with CF: 5:00 pm - 6:00 pm PST
Parents/Spouses/Partners of Adults with CF: 6:00 pm - 7:00 pm PST
Location: 1st Floor Conference Room, 730 Welch Road, Palo Alto, CA
or Participate by Phone: 1-650-736-4444
Facilitated by Meg Dvorak, LCSW
Research Participation: The Basics and Beyond - Colleen Dunn, RRT, CCRC
300 Pasteur Drive, 1st Floor, A175
For New Appointments, call CF Coordinator:
Adult routine appointments
Please call: (650)736-5400
News from the Adult Clinic
Letter from Stanford Adult Team regarding ORKAMBI More
July 13, 2015
As you may already know, Vertex Pharmaceuticals Incorporated has announced that ORKAMBI has been approved by the US Food and Drug Administration.
ORKAMBI is the newest prescription medication used for the treatment of Cystic Fibrosis patients age 12 years and older and is targeted towards those who have two copies of the F508del mutation in their CFTR gene. This medication is a combination of Ivacaftor and lumacaftor, and is dispensed in pill form.
The Stanford Adult CF Team is excited about the availability this medication which has shown good promise in decreasing CF exacerbations, and increase in lung function.
We are working now to determine those of our adult patients who qualify to receive ORKAMBI. We will be happy to discuss this with you at your next clinic visit.
Be advised, if you are eligible for ORKAMBI, you will be required to have a baseline Liver Function test, as well as baseline Spirometry prior to start of drug. All insurance companies have advised us we will need to submit proof of your genetic mutation, and may in some cases; also require results of your Sweat Chloride. We recognize that for some of you, you may no longer have copies of this, and we are prepared to schedule a repeat Sweat Chloride and/or Genetic Mutation for you if necessary.
Please be patient with us as we work diligently to determine your eligibility for ORKAMBI, and we appreciate your patience as we move forward on this process together.
The Stanford Adult Cystic Fibrosis Team
770 Welch Road, Suite 380, 3rd floor
Monday, Tuesday, Wednesday, Friday
For new Pediatric Patients
call: Erica (650)498-2655
Pediatric routine appointments
Please call: (650)724-4788
Nurse Coordinators/Clinic Nurse:
Please call: (650)736-1359
Bone Density (DEXA) (650)723-6855
PFT (full PFT's) (650) 497-8655
Emeryville, Pediatric Clinic
Emeryville, Pediatric Clinic
6121 Hollis Street, Emeryville
For all appointments, please call the nurse coordinator:
Cystic Fibrosis Research
Research is being conducted on the cause, biological mechanisms, new and better form of therapy and, ultimately, the cure for CF is an important part of our CF Center activities. You can be an important part of that research!
Research Participation: A Families Perspective
Richard and Rohini along with their rambunctious one-year-old daughter Ria live in Palo Alto, CA. Richard is originally from Belfast, Northern Ireland and Rohini is from Topeka, Kansas. Work brought them to the Bay Area and now they cannot imagine living anywhere else. On any given weekend you can find this family hiking the Dish, picking up goodies at the local farmers market, or running around Stanford.
Learning of Ria's condition through the newborn testing process Rohini and Richard experienced a whole variety of emotions from confusion to disbelief to anger and eventual acceptance. They are forever grateful to their family, friends, care team at Stanford, and pediatrician for their love, support, and patience.
Questions and Answers regarding the Research Process
1. How did you hear about the study?
Our incredible care team including Jackie Zirbes, Julie Matel, and Zach Sellers all introduced us to this opportunity
2. What were your concerns regarding enrolling your child in a study?
Our primary concern was the potential side effects that our daughter may face. It was a matter of understanding the anticipated benefits versus potential risks that helped us to decide to participate in this study.
3. What would you share with parents of young children who are considering enrolling their child in a study?
No question is too small or insignificant, ask every question that comes to mind. It can be directly or even peripherally related to the study, all of your questions matter. And my experience is that the team welcomes any and all questions at any time of day or night.
4. How would you describe your research experience?
Emotional. There have been some high highs as we see her stats improve but there have also been some low lows while we try to calm our nearly inconsolable daughter during blood draws. We would not have been able to get through those low moments without the support of our friends, family, pediatrician, trial care team, and clinic care team. We feel incredibly grateful for this opportunity and are hopeful that our daughter will be an even stronger, smarter, sassier version of herself at the end of it.