Cardio-Facio-Cutaneous International

Rating: 5 stars   13 reviews

Issues: Education, Health

Location: 183 Brown Rd Vestal NY 13850 USA

Mission: *Strive to help each other cope with the challenges of raising a child with a rare and often medically involved disorder *Act as a clearinghouse of information on all aspects of Cardio-Facio-Cutaneous Syndrome *Publish newsletters, CFC Parents' Guide and host a website *Educate the general public, medical professionals, and government agencies by disseminating information on CFC Syndrome *Facilitate research on this very rare syndrome
Results: We spent a lot of time this year pulling together a medical consensus meeting in California. This meeting will result in a publication on levels of care for individuals who are born with CFC syndrome. We will also be updating the parent guide and setting up a chart for care on our website so families can share this print off with their child's physcians.
Programs: Bi-Annual International Family Conferences with free medical consults, Private family list serve, Facebook, website with medical information and updates on research, Address Directory so families can locate each other in their region or state, Scientific Symposiums, and Newsletters

2012 Top-Rated Nonprofit
Write a Review
Invite people to share their experience with this nonprofit!

Filter Reviews by Role

Promote This Nonprofit

GreatNonprofits badges allow you to raise awareness of your favorite nonprofits on your own web sites!

Review this charity on
GreatNonprofits

Community Reviews

Rating: 5 stars  

Luego de conocerlos me di cuenta lo importante que es la labor que realizan para todas las familias con un chico con CFC. Yo tengo un primito con este sindrome y a el y a su familia le hacen muy bien! Gracias!!!!!!!!!!!!!

Will you volunteer or donate to this organization?

No

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? 
Rating: 5 stars  

CFC is a fantastic non-profit organization that needs all support from us in order to continue doing its important role in Latin America.

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? 
Rating: 5 stars  

This organization is very helpfull for all CFC families arround the world, we are happy to have found it!

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? 

We too are happy that you have found us! Welcome to the family!

Rating: 5 stars  

This is a great organization that helps to spread the word on a very rear disease. Great support for all families with a person with CFC as my son.

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? 
Rating: 5 stars  

We recently had a diagnosis for our child's condition. It is a rare mutation affecting 200-300 people worldwide. That means, even qualified doctors would not be able to comprehend the full range of the syndrome as it rarely comes across their practice. Therefore, we were really delighted to find CFC International which provides advocacy and information to all parents. I cannot think of any non-profit organisation that is more needed and fully deserving of a praise. All we had to do is post our current issue with our child and within 24 hours, there are a number of families posting their experience, which is quite comforting.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

Was this review helpful? 

The Internet has really helped all of us connect. It was a lonely world for those first 21 families who only connected by telephone or mail. I am pleased that you get answers back to quickly from the other families.

Rating: 5 stars  

My husband and I attend the CFC International Wine Tasting and Dinner Fundraiser every year. We have gained information yearly as to how research is advancing and the data base growing through the efforts of CFC International. We receive the newsletter which always profiles a family and their experience of finally receiving a diagnosis and how helpful that was in order for them to move forward with their lives. This is an organization that uses donations effectively and efficiently towards improving the lives of children and families coping with CFC Syndrome.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 

Thank you Pam. We are excited about our upcoming April 20, 2013 Toast the Angels Event. We have just competed a Consensus meeting where the doctors all come to consensus on Levels of Care for CFC syndrome individuals. So much good work going on! Brenda Conger

Rating: 5 stars  

1 person found this review helpful

I originally came into contact with CFC international when my daughter was almost 7 years old. At the time there was no clinical test to confirm CFC and very little information to be had. They provided a lifeline to information, connections to other families, and eventually assisted with research that identified a test to confirm a CFC diagnosis. Through their bi-annual conferences, they provide a place for gathering information, meeting specialist and inspiring future research. Prior to finding CFC International we waited 7 long years for a diagnosis, many families waited much longer, now thanks to CFC International, CFC children are generally diagnosed at under 1 year of age, providing much more information to parent much earlier. CFC International is absolutely committed to the families they serve!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

Was this review helpful? 

Yes I agree, the wait time is now much shorter since the gene discovery and it is parents like you who have moved research along further than we ever dreamed. So many exciting projects are now on the horizon.

Rating: 5 stars  

This organization has helped my family and many other to better undersand this rare syndome. Being no more than 400 cases in the world this organization has made a difference in our kids through research, guidance and sharing invaluable information and has also been the "guiding star" to us, parents of this angels by feeling part of a larger family and providing us moral support, genuine friendship and important tools to be more prepared to face our kids needs and challenges.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

Was this review helpful? 

What is so comforting is that through all the ups and downs we are all facing this together! CFC International

Rating: 5 stars  

When my son was diagnosed with Cardiofaciocutaneous syndrome, it had been a very long drawn out process and we were quite shell shocked. I was referred to them for information. Not only was all the information useful but someone called me withing 24 hours of signing up for their newsletter to offer help and advise me of the support groups out there. Without them i would still be trying to navigate through this very complicated and stressful syndrome. I go to them often for updates and questions. They also sponsor conferences in the US and UK for all the families affected by this rare genetic syndrome. I can't wait to attend my first one on 2013.

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

Was this review helpful? 

Thank you Susie! I am glad that our group is here to support you and your family. Brenda Conger President

Rating: 5 stars  

The work which this charity does has immensely benefited a very close friend of mine. The work in which they do to raise awareness is amazing and the community they have created for those affected by cfc has been very poignant and provided much needed support for my friends.

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? 

Emily, we are glad to hear that our efforts are helpful to others.