CYSTIC FIBROSIS RESEARCH INC

Rating: 4.95 stars   148 reviews

Issues:

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.
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EIN 51-0169988
650-404-9975
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Community Reviews

Role: Professional with expertise in this field
Rating: 5 stars  

1 person found this review helpful

This is one of the best organizations in our CF community,I have been associated with them for over 25 years. .I was a co-founder with Lois Adams for the first ever Speciality CYSTIC FIBROSIS PHARMACY in Orlando Florida. We did it as I had a grandchild born with Cf and no one could really help with the various meds/ supplies needed for the CF families.
Lois was very well trained in putting this together , having been the Director of the local Regional hospital where all illness were brought.
I was the President of the Central Fl. CF Support Group and was very active in other venues about CF. We made a great team...
The CFRI was the biggest and the best and the ONLY one at the time that dealt with the families AND adults with cf. The CFF only did fund raising for research , along with NIH..at that time.

I am now retired , but still active in the Cystic Fibrosis community,as well as LUNG TRANSPLANTS.. My grand daughter has had a double lung transplant .She is now 30 years old .She is also very active in fund raising for the cause as well,.

The CF Pharmacy is not a non-profit, technectly, BUT ,there is much done for families that could put us on that list over the past 30 years..

The CFRI is the most active and and productive all over for the Cystic Fibrosis Communities all over the world..
I would rate then NUMBER ONE...........in the world..

I look forward to seeing them all in the future.......
GrandmomBev
Beverley Donelson

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

I wish it was more centrally located for easier & ls expensive to attend & travel etc. costs. It has such great speakers & their educational program is great.

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2014

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Role: Professional with expertise in this field
Rating: 5 stars  

1 person found this review helpful

CFRI is an amazing non-profit that continues to grow in critical ways for the cystic fibrosis community. At a time where research funding is scarce, CFRI works hard to fund new, cutting-edge science in search of a cure, and to support a better quality of life for those with CF. Their programs and materials make information accessible and link the experts to patients and families. With Sue Landgraf at the helm, an amazing staff and an engaged, active Board of Directors, this organization responds to the community with commitment, energy and compassion. As an attendee at the recent National CF Family Education Conference in California, I could see first hand that CFRI is an extraordinary group of people dedicated to helping all of us who are touched by CF.

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2014

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Role: Professional with expertise in this field
Rating: 5 stars  

1 person found this review helpful

I was honored to be invited to give a keynote address to the Cystic Fibrosis Research Inc's (CFRI) "27th National Cystic Fibrosis Family Education Conference" on August 1, 2014. I learned much more about this outstanidng organization, which promotes basic science research, public education, and support for patients and families with cystic fibrosis (CF). CF is a complex genetic disorder, and patients must address a number of treatment needs each day, often totaling 2-3 hours per day. CFRI is a greass roots organization that comes along side patients and their families to help. IN addition, they support important basic science research that will help find a cure for CF, as well as improving the care of CF patients until the cure is found. I higly endorse this outstanding organization, which is worthy of your support.

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2014

Was this review helpful? 
Role: Professional with expertise in this field
Rating: 5 stars  

1 person found this review helpful

I work with the health care professionals that care for people with cystic fibrosis, and occasionally the families with loved one with CF. In my experience, CFRI has provided the CF community with valuable resources in the way of fundraising, educational conferences, and support. I look forward to continue working with CFRI in the future.

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2014

Was this review helpful? 
Role: Professional with expertise in this field
Rating: 5 stars  

1 person found this review helpful

This is a fine organization which we have supported for over 20 years. Although CFRI is in California and the Cystic Fibrosis Pharmacy, Inc. is in Florida, we have felt a very close kinship to the organization, the principles on which they stand, and their kindness and caring for others. Their yearly conferences cannot be beat for clinical information and comraderie. I am deeply impressed with the caliber of the research that they support and their dissemination to the professionals at their meetings. One of the most touching items of their agenda is the yearly Memorial Service which is a must for us to attend as we have known many of the patients over the years. We plan to continue to support their efforts for many years to come.

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

Not....I just pray that they continue to do the wonderful things that they are doing.

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2014

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

I have had 40 years of experience with non-profits that support biomedical research, in the capacity of advisor, grantee, and reviewer. I've been involved in these capacities with CFRI for more than 10 years and I have to say that t hey are one of the most efficiently run groups I've worked with. They support patients, families and research scientists and are incredibly dedicated and effective at what they do. I

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2014

Was this review helpful? 
Role: Professional with expertise in this field
Rating: 5 stars  

1 person found this review helpful

As a physician caring for children with CF I have nothing but admiration for this organization. The inclusiveness and truly patient and family centered approach that marks the conduct of their annual meetings is a model for all such organizations. Their commitment to fostering high level and innovative research is no less praiseworthy. Though I am certainly a fan of what the CFF has achieved, the CFRI fills a niche that other organizations do not in the direct access those actually affected by the disease have in every aspect of the CFRI's operations and events. Bravo.

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

Give it a bigger budget!

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Role: Professional with expertise in this field
Rating: 5 stars  

2 people found this review helpful

CFRI is a truly non-profit organization operated by a small, truly dedicated, full time staff along a number of parents, patients, family members and friends who volunteer to accelerate the therapy and understanding of cystic fibrosis. As a research scientist, working on Cystic Fibrosis for the past 40 years, I have seen the organization grow from a seed of parents determined to fight the disease by investing relatively small sums of funds in strategic areas for understand the pathology of the disease and especially at the same attracting young investigators to career in this area of medicine. In my veiw, the organization is especially conscious of where the funds they receive come from and equally conscientious of how they use them. CFRI is not a large organization, but it continues to make this part of our world a better place.

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Role: Professional with expertise in this field
Rating: 5 stars  

2 people found this review helpful

Living with CF means hours of home treatment every day. That's EVERY single day. CFRI provides much needed and insightful support to families living with CF. They make continuing education accessible to famiies living with CF. I'm happy to support their efforts. Thanks CFRI! J. Romero, LCSW

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Role: Professional with expertise in this field
Rating: 5 stars  

1 person found this review helpful

Carroll and David are wonderful leaders for CFRI. They bring passion and expertise to the CF advocacy community. They have brought unique and valuable educational and peer-to-peer programs to the CF community--patient and healthcare providers.

How does this organization compare with others in the same sector?

Quite well

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

A lot

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

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