CYSTIC FIBROSIS RESEARCH INC

Rating: 4.95 stars   148 reviews

Issues: Health

Location: 1731 Embarcadero Road Ste 210 Palo Alto CA 94303 USA

Mission: The mission of Cystic Fibrosis Research Inc. is to fund cystic fibrosis research, to offer educational & support programs and spread awareness of cystic fibrosis. What sets CFRI apart from other CF organizations is our commitment to provide educational and personal support to those living with cystic fibrosis and their families. It has been shown that informed and knowledgeable patients maintain healthier lives. We believe that the information and assistance that CFRI offers can help reduce much of the emotional and physical distress associated with this prevalent, life threatening genetic disease.
Programs: We fund cystic fibrosis research regionally and nationally and currently supporting 5 post-doctoral fellows and support 3 CF research projects at Stanford, UCSF, UCSD, CHORI, SDSU. We host an annual educational conference, attracting renown speakers and participants from across the country. We issue three newsletters per year, free of charge to over 15,000 constituents. We also hold an annual Teen and Adult retreat for the CF community. We provide on-going support groups for teens and adults with CF and for parents and caregivers of children with CF. We oversee and information based website which is accessed by over 5,500 people each month. A Caregivers support program has recently been launched for the CF community. We provide direct information and referral to all in our community. Educational materials are available and free to the community.
2014 Top-Rated Nonprofit
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EIN 51-0169988
650-404-9975
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Community Reviews

Rating: 5 stars  

2 people found this review helpful

One of my favorite organizations! They do so much for the CF community, including providing a sense of community. There aren't enough words to say what they mean to me.

If I had to make changes to this organization, I would...

not change a thing.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

2 people found this review helpful

I found out about CFRI through a grandmother who was crusading for her CF striken grandchild. I attended 2 conferences in 2011 and 12.

This is one of the hidden gems, working relentlessly for the cause of CF. Their 2 day annual conference and camp are an amazing forum to meet, interact with the best minds in the business. I have learnt a ton from this organisation which I am sharing with other families as we all cope with the devastating effect of CF and hope for a cure one day.

Sanjeev Bode Dallas TX

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

1 person found this review helpful

In 1982 our grand-niece was born and a few months later she was diagnosed with CF. At the time, life expectancy for those diagnosed with CF was in their mid-20s. Our grand-niece is now 30, married, and with a beautiful daughter of her own. The research CFRI does is priceless to the loved ones of people coping with CF. I hear lots of good things about CFRI from family members who have participated directly with major fundraising events and have served on the board.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2011

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Rating: 5 stars  

2 people found this review helpful

CFRI has been a part of my life for many years now. My son, who is now, 19 years old was diagnosed with Cystic Fibrosis shortly after birth. Through CFRI, I have been able to educate myself and my son through newsletter and online video topics. They keep me abreast of the latest research and share heartwarming stories. The CF community benefits from CFRI even though we are a thousand miles away. Thank you CFRI.

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

2 people found this review helpful

Cfri has done an outstanding job of keeping me informed of important information from the latest ground breaking research to a wide variety of upcoming events and activities. Cfri have gone out of their way on multiple occasions to answer my questions via a personal phonecall. I have not been only very impressed with what they are able to accomplish with such a limited staff but also very grateful. -Dave Pastush

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

2 people found this review helpful

When I attended my first CFRI conference, I felt like I had come home. I was welcomed by a warm, caring, compassionate and friendly staff. I immediately knew that I wanted to become involved in this organization, which isn't easy to do while living in the Midwest. But, no matter how little I was able to do for them, the staff and volunteers were always appreciative; they always make one feel valuable. CFRI is the only venue where I'm able to hear speakers talk about the latest research as well as other topics of interest to those with CF. I've often told my husband that if we could afford a home in California, I would move there just so that I could participate and volunteer more with this most impressive association.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

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Role: General Member of the Public
Rating: 5 stars  

2 people found this review helpful

CFRI is a real Godsend! Great group of dedicated professionals!

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

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Role: General Member of the Public
Rating: 5 stars  

2 people found this review helpful

CFRO is a great resource for any new or longtime cystic fibrosis patient and family. They provide much needed information and support to the CF community.

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

2 people found this review helpful

Cfri does monthly meetings which are live streamed so everyone can attend. Their yearly retreat changed the life of my daughter. Ty's nonprofit is amazing!!!

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

2 people found this review helpful

I am the grandmother of two children who have cystic fibrosis. When our granddaughters were diagnosed with cf, I had no idea what it was or how it would affect their lives. CFRI has has been a wonderful resource for understanding the disease, as well as keeping up to date on the treatments that are developing.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

Was this review helpful?