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.

Each year the Department recognizes an outstanding staff member who contributed to team performance by providing encouragement and support, helped others overcome obstacles, and successfully accomplished goals; was an honest and dependable team player who contributed to group collaboration and consensual decision making and showed empathy and respect for others; and who built and maintained good working relationships.


Maya Melendrez was the winner of the Collaboration Award from the Department of Pediatrics.  She is a very dedicated member of our team and this award was well deserved.

Meg Dvorak
Honored for Cystic Fibrosis Professional of the Year

Meg Dvorak, Licensed Clinical Social Worker in the Cystic Fibrosis Clinic at Stanford Healthcare, was recently honored at the Cystic Fibrosis Research Institute's annual conference as the Cystic Fibrosis Professional of the Year.  Meg was selected from a nationwide group of nominees.  This award has previously been given to physicians and scholars, and Meg is the first social wworker to receive this honor.  Meg has been a passionate and tireless advocate on behalf of patients and families receiving care at the Cystic Fibrosis Clinic, and for that she has been acknowledged for her work on a national level.

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

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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

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

Thursdays

For all appointments, please call the nurse coordinator:

(650)724-8414

 

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!

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.

News Briefs

SAVE THE DATE

March 10th, 2018

 

Siblings with double-lung transplants beat the odds.

Follow link to story-http://healthier.stanfordchildrens.org/en/siblings-double-lung-transplants-beat-odds/

 

 

Lauren Catron and Dr. Carol Conrad-A Successful Journey to Adult Care


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