2015 NUCDF Annual Conference


July 10-12, 2015

Cleveland Marriott Downtown at Key Center

127 Public Square

Cleveland, Ohio 44114

Hope you didn't miss this conference!

Our 2015 conference moved to the Midwest/Great Lakes region. Over 150 families and medical professionals came together in Cleveland, Ohio for a life-changing experience. Together, they took advantage of this unique opportunity to meet to learn about advances in research, new treatments, and cutting-edge management insights that can help improve the lives of children and adults with UCD. 

Our conference was held in conjunction with a 2-day scientific meeting of our National Institutes of Health Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium (UCDC). The UCD Consortium is an international network of research and clinical "centers of excellence" that conducts pioneering investigations to improve the knowledge of UCDs, as well as clinical trials for new treatments and a natural history study of UCD patients. The General Session of the Family conference on Saturday, July 11, included presentations and the latest research updates from Consortium scientific and medical experts.

Our conference hotel, Cleveland Marriott Downtown at Key Center was located in the heart of Cleveland's business district within walking distance of the Rock and Roll Hall of Fame, fun-for-kids Great Lakes Science Center, and offered breathtaking views of Lake Erie and the city skyline. 

The kids had a magical time in our conference childcare - Kids Kamp. They had a great time in Kamp activities, met other UCD children and made some life-long friends.  The kids didn't want to leave at the end of the day!

Stay informed

If you weren't able to attend the conference, you'll want to stay up to date on the latest developments in our UCD world. If you are not already a member of NUCDF, please accept this personal invitation to join us, stay informed and be part of our international UCD community!  Membership is free, but the benefits are priceless. Let's keep research momentum going. Together, we WILL find a way to end the devastating effects of UCD!

  Our Dream is a Cure, and we can't
rest until we find it...


COMMENTS FROM THE 2015 CONFERENCE

We are very excited and so happy that we were able to meet you all and are so appreciate of all of the information we learned! Thank you all!! ~ RG

I wanted to send a quick but huge THANK YOU for all you do, but especially for putting on such an amazing conference. Our first conference experience was nothing short of amazing and I am already looking forward to next years! Thanks again for your dedication to our families! We would be lost without you. If there is ever anything I can do to help, please do not hesitate to let us know. ~ SM

I just wanted to say Thank You! My husband and I learned more in 2 days than we had in 2 years! ~ EG


From Facebook:
I'm so happy we finally met in person! We learned a great deal, and the conference helps combat the feelings of isolation and fear that come with a UCD. Everyone we met was so welcoming, compassionate and genuine. ~

The NUCDF conference we attended in Cleveland was just awesome. These doctors are the best in the world when it comes to urea cycle disorders and I feel so thankful to have heard what they have to say. We have a lot to think about after this trip in terms of how we want our son's future to be. It was so nice meeting families and especially others moms who understand what it's like to have a child with this disorder and the stress that it brings. They were so comforting when I was an emotional wreck. I feel like they have been my friends for a long time already :-) a big thank you for putting this together and taking the time to talk to me about my son, and for being such an advocate for our kids!!!!! We are beyond blessed to have this help. ~

Thanks so much the fantastic National UCD Conference in Cleveland, OH. It was such a fantastic gathering of families and health care professionals! ~


REVIEWS, COMMENTS FOR THE 2014 CONFERENCE

 

"The conference was so full of information I will use daily to help my daughter live life to the fullest. I learned so much from the presenters, doctors, and other families and individuals living with UCD. Thank you for empowering me with knowledge and filling me with hope."

"We are so grateful to you for this convention of minds. So much great info! We are overwhelmed, but it has stimulated so many new thoughts about how we can improve our daughter's care. We met people that really care and know how we feel.  NUCDF has given us hope. We got information we can trust, and met people who want to help us."

"We thank God every day that despite the fact that our daughter was born with this disease, we have this incredible Foundation behind us. Your support has been incomparable."

"My son got so involved and was blown away by the conference and insists we to to every one from now on. I was so humbled and astonished by the entire gathering. I haven't been to a conference since the 90s, and I cannot believe the progress. It is hard for me to wrap my head around!"

"It was a great conference. I gained so much in hearing about all the advances and what is happening nationwide. If there is any way I can help out on an ongoing basis, please let me know. I am going to try and get the word out to San Diego families who may need some support. Looking forward to next year."

"I had an absolutely fabulous time at the convention! Met so many people and learned so much! NUCDF is like family."

"I want to give a special THANK YOU for putting on a spectacular conference and for all you do for us...without you so many of us would not be here today, you have touched so many lives and for that I am forever grateful."

"The conference was amazing! I really enjoyed getting to meet so many different people. It was truly inspirational. I learned so much more about UCD - I thought I knew everything! We're looking forward to next year."


REVIEWS, COMMENTS FOR THE 2013 VIRTUAL ONLINE CONFERENCE

So pleased to be able to join in this year through the virtual conference. The Florida 2008 conference was such a long time ago, but we loved being there. Thanks for making it possible to join in again this year from the UK xxx"

"Excellent job!! ....amazing amount of information, great interaction, and I think you've touched many families today that could not have made the trip!! We watched the whole thing. ...Nice job."

"Great conference! Lots of info to digest and discuss with my doctors! Thank you to NUCDF and all of the presenters!"

"I just wanted to tell you that I thoroughly enjoyed this years virtual conference and appreciate all the hard work and dedication it took to make it all possible. It was truly informative and I gained more knowledge after listening to each presentation. Our son (arginase defeciency) spent weeks in hospital this winter due to high ammonia levels and I was really looking forward to the conference. I just wanted to send this email to let you know I really appreciated today... thinking of you all and all our urea cycle families!"

"Congratulations on the virtual conference. It was amazing to see the progress that has been made since I first started attending!"

"My husband and I have never attended a conference before, but we were completely surprised (and a bit overwhelmed) with the information that was provided. We learned an incredible amount that we think will help us in caring for our daughter. She has had some bouts in the hospital recently that our doctors couldn't figure out, but the reasons were made clear to us by the information in Dr. Lee's presentation! Thank you for all your efforts to give our families access to this conference. We hope to be able to attend in person next year."

"NUCDF is always on the cutting edge - great idea and great conference!"

 

 

 

Urea Cycle Disorder Family

No matter what language you speak, Together, we can conquer UCD!

Juntos, somos una familia!
Ensemble, nous pouvons vaincre UCD

Gemeinsam können wir erobern UCD

Μαζί, μπορούμε να κατακτήσουμε UCD

Insieme, possiamo conquistare UCD

Вместе мы можем победить UCD

Tillsammans kan vi erövra UCD

Saman getum við sigra UCD

UCD معا، يمكننا قهر

一緒に、我々はUCDを征服することができます

با هم، ما می توانیم UCD تسخیر


Sponsors

We appreciate the support of our conference sponsors!

Gold Sponsor

Cytonet, LLC

Silver Sponsors

Recordati Rare Diseases

Vitaflo

Bronze Sponsor

Lucane Pharma

Low Protein Food Sponsor

Cambrooke Foods

Comments from our UCD community:

"So glad the conference will be in Cleveland, only 2 hours from us and where are geneticist is."

"Yea! Ican drive there. I can't wait to hear all the latest!"

2013 NUCDF Conference 2014 NUCDF Conference 2015 NUCDF Conference Cycle Challenge Rare and Precious NUCDF Hoops for Hope Other