CallUs:

918-490-3055

RESOURCES

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.
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USDA Guidance
fns.usda.gov
 
 
This is must read for every parent of a UCD child eating lunches in public 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
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Miracle Flights
miracleflights.org

 
 
 
Ever needed a flight to see a UCD doctor because they weren’t within driving distance? Are airfare costs keeping you from getting there? Miracle Flights is a non-profit that provides free airfare on a major commercial airline 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.

CFUCDF will help cover costs of ground transportation and (1)overnight accommodation if needed for the UCD community.

Please click the blue links for more information:

Application and Required Forms Here

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PALS (Patient AirLift Services)
palservices.org

One PALS Flight could change everything…
Patient AirLift Services (PALS) arranges free air transportation for individuals requiring medical diagnosis, treatment or follow-up, for compassionate assistance, for military personnel/family requests through the PALS for Patriots Program, or for humanitarian purposes through the PALS Sky Hope Disaster Relief Program. Please take a moment to view the Digital Brochure below and contact us or them directly with any questions. These people are AMAZING and do some really awesome work for our troops, hurricane victims in need, and now can help our rare community to get to your appointments as well.

CFUCDF will help cover costs of ground transportation and (1)overnight accommodation if needed for the UCD community.

PALS- digital flip brochure

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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.

CFUCDF Patient History Meds Form

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Global Genes
http://globalgenes.org
 
 
 
 
 
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”!

 
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NORD (National Organization for Rare Disorders)
http://rarediseases.org

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.

NORD UCD Medical Foods & Supplements Financial Assistance Program FAQ

NORD Patient Assistance Programs/Contact Info

NORD UCD Emergency Relief Fund FAQ (English)

NORD UCD Emergency Relief Fund FAQ (Spanish)

NORD Genetic Testing Financial Support
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EURORDIS
http://www.eurordis.org

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

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CORD (Canadian Organization for Rare Disorders)
http://www.raredisorders.ca/

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.

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Clinical Trials
http://clinicaltrials.gov/

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.

https://clinicaltrials.gov/ct2/show/study/NCT02991144?cond=%22Ornithine+Carbamoyltransferase+Deficiency+Disease%22&rank=4#contacts

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Good Days
http://www.mygooddays.org

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.
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UCD In Common/Recipes for UCD diets
https://www.ucdincommon.com/low-protein-recipes

UCD in Common is a website that provides very helpful information on UCD’s and provides some perfect recipes for low protein diets. We also highly recommend the UCD in Common cooking events held throughout the country during the year. These events are a great place to meet others. You’ll leave each event with new connections, great memories- and you get the recipes too!.
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