Connecting Families is grateful to our “friends helping friends” providing great resources!
We are listing resources here to bring more information to help meet needs. Bringing education, awareness, and support are key to UCD’s and we’ll be adding more as we receive more information. Have questions or comments? Please take a moment to view these resources as another “tool” to put in your “toolbox”. Thank you in advance for your support of our friends and partners!
We would like to hear from you. You can use the Contact Us tab in the main menu to reach us.
This is must read for every parent of a UCD child in school:
A Manual for School Food Service Professionals
USDA Memo/2017 Edition:
Accommodating Children with Disabilities in the School Meal Programs
Check out this very helpful Q & A from the USDA:
USDA Q&A Document: Accommodating Disabilities in the School Meals Program
You or your loved one have a UCD? Ever needed a flight to see a doctor? Ever not had enough money to fly there? Miracle Flights is a non-profit that provides flight assistance on commercial airlines to patients in need of distant medical care across the U.S. Programs include: Domestic Flight Support, International Flight Support, Service Dog Training/Retrieval, Flight Support, and Organ/Blood Donor Flight Support, based on program eligibility for both children and adult patients. They also have recurring flights available if you have recurring appointments. This is not just a “one and done” program. They have been helping families with costs of airfare for 30 years and we are honored to have them supporting us all by alleviating costs associated with having a UCD. Thank you Miracle Flights!
Our friends with UCD’s can benefit from this, especially if you live in a remote area with limited access to specialists.
Please click the blue links for more information:
Application and Required Forms Here
UCD Patient Form
This form is a valuable tool for your records and will help with redundancy at doctor’s visits and hospital stays. It’s color coded by section so it is easily understood. Thanks to Amy Reese, RN, (Resources Coordinator) for making this form. Please download it and use it for your care records. Click the blue link below to open the form. Use our “contact us” form for helpful suggestions about this form for the UCD community.
Global Genes is an AMAZING advocacy organization with a collection of resources that are invaluable. They have been so helpful to us and we adore the team at Global Genes. Please take a look at their website, you will find a wide range of information on many different topics, all dealing with rare diseases. On their website you will find the Rare Toolkits and the Rare Webinars, our UCD families will find these most helpful. “Go Global Genes”!
NORD (National Organization for Rare Disorders)
The National Organization for Rare Disorders is a patient advocacy program providing services for patients and their families, rare disease patient organizations, medical professionals, and those seeking to develop new diagnostics and treatments. They support every member of the rare disease community with programs and services focused on one ultimate goal: to improve the lives of individuals and families affected by rare diseases.
NORD now offers a Financial Assistance Program to support those patients with UCD’s who are experiencing high out-of-pocket expenses for their medical foods and supplements. This program provides assistance to public and private insured and even uninsured patients who meet eligibility criteria. Please take a moment to click on the highlighted link below for contact information. This is a downloadable PDF and an FAQ along with contact information to apply for the assistance directly through NORD.
Click the blue links below to view.
EURORDIS is an overseas, non-governmental patient-driven alliance of patient organizations representing 724 rare disease patient organizations in 64 countries covering over 4000 diseases. Rare Connect is one of their initiatives (social media) and Robyn is the moderator of the UCD group. Sometimes it’s easy to forget that UCD’s are not just in the US. Many are affected in other countries all over the world and they need support just like we do. Please take a look and become part of the conversation here: http://www.rareconnect.org/en/community/urea-cycle-disorders
CORD (Canadian Organization for Rare Disorders)
CORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada. 1 in 12 Canadians has a rare disorder. Many others are affected or at risk but remain undiagnosed and unaware. CORD provides information to individuals, and links to other rare disorder support groups and organizations.
Clinical Trials is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world. Learn more on clinical studies including relevant history, policies, and laws.
Posted June 9, 2017
There is currently active recruiting for a gene therapy study in the Portland, Oregon and Cleveland, Ohio area. If you have emailed us for the brochures AND after reading the brochures you are interested, please click the link provided below and it will take you directly to the Clinical Trials page which outlines more specifics. It includes contact information and email addresses as well.
Good Days is a site that will assist with paying for medication and/or travel assistance for those with rare disease. The dietary info posted on this site may not be intended for UCD patients. Please always follow the instructions of your physician first. This site link is being posted by Connecting Families for helping our UCD community with financial assistance for meds and/or travel. The dietary suggestions should always be approved by your dietician and/or physician as all diets/protein restrictions are different among patients.
UCD In Common/Recipes for UCD diets
UCD in Common is a website that provides very helpful information on UCD’s and provides some perfect recipes for low protein diets. For those of you who attended our Seattle event and were able to attend the second venue with Chef Jeff, these are his recipes here. Chef Jeff’s recipes are awesome and his meals so delicious. We highly recommend them (the Yucca fries, OMG), be careful though, addiction is possible! LOL. Click the above link to check them out!