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2012 Top-Rated Nonprofit

Cardio-Facio-Cutaneous International

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Nonprofit Overview

Causes: Education, Health, Heart & Circulatory System Diseases & Disorders, Pediatrics

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

Community Stories

13 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

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!!!!!!!!!!!!!

Comments ( 1 )

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bconger 12/08/2012

You are welcome!

General Member of the Public

Rating: 5

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

General Member of the Public

Rating: 5

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

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bconger 12/08/2012

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

Alejandra C.

General Member of the Public

Rating: 5

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.

Client Served

Rating: 5

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.

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bconger 12/08/2012

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.

Donor

Rating: 5

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.

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bconger 11/17/2012

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

1 Michelle117

Client Served

Rating: 5

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!

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bconger 11/17/2012

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.

Client Served

Rating: 5

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.

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bconger 11/17/2012

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

Susie A.

Client Served

Rating: 5

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.

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bconger 11/16/2012

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

Emily50

General Member of the Public

Rating: 5

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.

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bconger 11/16/2012

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

Kelly63

Client Served

Rating: 5

We were in complete shock to find out that our daughter might have a rare genetic disorder. As a parent you start to understand how rare CFC is when every Doctor you come accross has heard of CFC but never seen it in practice. Very frustrating when you want help and answers. CFC International accepted us and gave us immediate advice and support without a confirmed diagnosis. We felt supported, accepted, and it gave us the confidence to ask questions knowing that the answers were coming from experienced people who know what it is like to live with a child who has CFC. We have made contact with people all over the world and in our home country. We are looking forward to meeting other families at the 2013 conference in the UK. I couldn't imagine going through this period of our lives without CFC. Thank you to all the selfless people behind the scenes who make it possible for us to connect. Kelly Stallwood Mum to Zara 11 Months ?cfc ?Noonans Syndrome UK

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bconger 11/16/2012

Kelly, you are so right when you you make mention of how most doctors have never seen or heard of CFC. You will become the expert and educate your daughter's medical providers over time.

Kat T.

Client Served

Rating: 5

CFC International provides amazing support to families affected by CFC Syndrome, a rare genetic syndrome. This is accomplished by publishing a great newsletter, sponsoring family and medical conferences every other year, in which my family and I plan on attending this year for the first time and there is also an email listserv and a discussion group for parents on Facebook that you can talk to other CFC family 24 hours a day 7 days a week. No matter what my question may be or the sitution that may come up with my daughter who has CFC, I always get very helping responses from this group. They have helped me and my family tremendously.

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bconger 11/16/2012

Kat, we are excited to meet your family this coming summer in Orlando. Glad you are part our close knit family!

2 Kyle9

Client Served

Rating: 5

CFC International provides support to families affected by CFC Syndrome, a rare genetic syndrome. This is accomplished by publishing a great newsletter and sponsoring family and medical conferences every other year. There is also an email listserv and a discussion group for parents on Facebook.

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bconger 11/16/2012

Kyle, we could not have gotten to where we are today without you! The Consensus meeting in CA was supported by your efforts to obtain the grant from your company. Our work has just begun!