Skip to main content

Resources

Family Support

We know UCD and we're here to help you!

Whether you are facing UCD for the first time or you're a UCD veteran, we can help with information on diagnosis, learning how to manage a urea cycle disorder, and living with UCD. If you have questions, concerns, or just want to stay up-to-date, we are here to help with credible information, support and guidance.

Contact us at (626)578-0833 

Mentor Program 

The NUCDF Mentor Program was developed to provide newly diagnosed families an opportunity to receive personalized guidance, education and support specific to their family and disorder situation.  Family Mentors are carefully chosen from families in our UCD community according to their depth of knowledge and experience living with, caring for and managing a child with a UCD.  Our Mentors are dedicated to helping families learn more about their child’s specific disorder, the rationale behind treatment and management regimens, discuss concerns and issues, and provide suggestions on how to work effectively with the medical professionals caring for their children.

If you would like more information on the NUCDF Mentor Program, or wish to be matched with a Family Mentor, please complete the Family Support form below.

Family Networking Program

Our Family Networking Program is designed to enable UCD patients and families to communicate and network together for support with others in their geographical area, or with those affected by their specific disorder.

First Name *
Last Name *
Country
Address Line 1
Address Line 2
City
State/Province
Postal Code

Completing the following questionnaire is optional. However, it will assist us in understanding and supporting the needs of our urea cycle families and determining prevalence and outcome of the disorders.

A. Do you have a child that has been diagnosed with a Urea Cycle Disorder?

If you answered 'Yes' to question A, please proceed to question B. If you answered 'No', why have you decided to join the NUCDF?

B. Please complete the following information regarding all of your children, including those not affected by UCDs:

Is this child Living?
Is this child Living?
Is this child Living?

If you have been diagnosed with a urea cycle disorder:

Our goal is to educate medical professionals and provide update information about new treatments, tests, etc. Please provide your physician's contact information to be included on the physician mailing list:

D. Name of treating geneticist/metabolic specialist:

First Name
Last Name
Country
Address Line 1
Address Line 2
City
State/Province
Postal Code

J., OTCD, Germany

Thank you very much for the spring issue of the newsletter. How pleasant it is that NUCDF remembers and care about us. Each time we receive new information, I feel that we are not alone and it warms my soul. Please wish all members of NUCDF health and well-being from our family.

Best Regards,
H.B. - Moscow, Russia

I know we have talked several times over the life span of my son and you have blessed us with the guidance and knowledge that you have shared!  I also want to THANK YOU for always being there when not only my son has been in crisis but I have too!  Without your guidance I would not have my son here with us today and for that I will forever be grateful!

L.S. - USA

Congratulations! I am so happy to hear that NUCDF received the 2010 Advocacy Award Of Merit!!! You and your hard work are such an inspiration to me! My family and all the other UCD families are so lucky to have NUCDF in front of us, building a path on which we all can walk on, feeling confident and full of hope. 

X.V. - Mexico

I want to say thank you for helping children like me. I am 10 years old and I have OTC. Good luck & Best wishes! 

A.M. -  Australia

I have a grandson that has UCD.  Thank you for the time you spent speaking with me to help me understand his disorder. It is my pleasure to support NUCDF and also hope that some day there will be a cure.

S.B. - USA

The work that the Foundation has done to raise awareness and funding for the research and hopefully cure for urea cycle disorders is nothing short of amazing!

L.J. - USA

MENU CLOSE