About Us
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.
CF Education Day, Saturday, March 12, 2016
The Cystic Fibrosis Team at Stanford
cordially invites all interested adults
to attend our 16th annual CF Education Day
on
Saturday, March 12, 2016
Please join us at the Arrillaga Alumni Center
for continental breakfast starting at 8:30 AM
The formal program will begin at 9:00AM
We are pleased to announce our
keynote speaker for 2016
Dr. Steven Rowe
Professor, Department of Medicine, Pediatrics, and
Cell Developmental & Integrative Biology
Director, Gregory Fleming James
Cystic Fibrosis Research Center
Gwaltney Endowed Chair Medical Research
University of Alabama at Birmingham
“New Developments in CF Research”
General session for all attendees before lunch
After lunch there will be 2 breakout sessions
One session addressing pediatric issues
One session addressing adult issues
All sessions conclude at 3:00 PM
A boxed lunch will be provided
Please RSVP by calling (650) 723-8325 or
email Ms. Maya Melendrez at mayamel@stanford.edu to register
Last day to register is March 9, 2016
2016 CF Education Day – BlueJeans Links
Morning General Session
Participant Hyperlink: https://bluejeans.com/550109379/5348
Afternoon Peds Session
Participant Hyperlink: https://bluejeans.com/832928277/7372
Afternoon Adult Session
Participant Hyperlink: https://bluejeans.com/150431205/6618
Please mute microphone and webcam upon entry to meeting. Thanks!
*** For Spansih Speaking Attendees***
If you want to join the conference via the phone or web-ex:
1) DIAL:
+1 408 740 7256, or
+1 888 240 2560 (US Toll Free), or
+1 408 317 9253 (Alternate Number)
2) Enter Meeting ID: 210979722
3) Participant Hyperlink: https://bluejeans.com/210979722/7769
Pediatric Session
If you want to join the conference via the phone or web-ex:
Just want to dial in?
1) Dial:
+1 408 740 7256, or
+1 888 240 2560 (US Toll Free), or
+1 408 317 9253 (Alternate Number)
2) Enter Meeting ID: 423303280
3) Participant Hyperlink: https://bluejeans.com/423303280/9630
2014 Caregiver of the Year
Dr. Carlos Milla
CF Center Director at
Lucile Packard Children's Hospital Stanford
Dr. Carlos Milla, Director of the Pediatric Cystic Fibrosis Center at Lucile Packard Children’s Hospital Stanford was honored as CFRI's Caregiver of the Year at their spectacular Wine for a Cure event on October 19th. CFRI recognized Dr. Milla for the exceptional care he provides to his patients, his active involvement in CF-related clinical trials, his support of family-centered care in the CF Center, and his expansion of care and support to the Spanish-speaking CF community. Congratulations to Dr. Milla!
Appointments
Adult Clinic
Adult Clinic
300 Pasteur Drive, 1st Floor, A175
Wednesdays, Thursdays
For New Appointments, call CF Coordinator:
(650)498-6840
Adult routine appointments
Please call: (650)736-5400
News from the Adult Clinic
Letter from Stanford Adult Team regarding ORKAMBI More
July 13, 2015
Dear Patient,
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.
Best regards,
The Stanford Adult Cystic Fibrosis Team
Pediatric Clinic
Pediatric Clinic
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
Bone Density (DEXA) (650)723-6855
PFT (full PFT's) (650) 497-8655
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!
To find out how, call a research coordinator today!
Phone 650-736-0388 or
email us to join the team!
News Briefs
SAVE THE DATE
CF Education Day
March 12th, 2016
