Connecting Families UCD Foundation

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 an you can contact us here.

Click on any of the resource items below to learn more about each:

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Wrightslaw.com

www.wrightslaw.com

Wrightslaw provides accurate, up-to-date information about special education law and advocacy on Wrightslaw.com.

Pete Wright is an attorney who represents children with special educational needs. Pete struggled with learning disabilities, including dyslexia, dysgraphia and ADHD. His determination to help children grew out of his own educational experiences.

Pam Wright is a psychotherapist who has worked with children and families since the 1970’s. Her training and experience in clinical psychology and clinical social work give her a unique perspective on parent-child-school dynamics, problems, and solutions. Pam has written extensively about raising, educating, and advocating for children with disabilities.

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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 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

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)

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.

NORD Updates March 2019:

This updated flyer has all of their previous programs combined in a new 2-page downloadable document. Programs include UCD Copay Program, UCD Medical Assistance Program, UCD Diagnostic Testing Program, and the UCD Emergency Relief Program.

NORD Urea Cycle Disorder Patient Assistance Programs

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EURORDIS

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)

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

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

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

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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The ASIEM Low Protein Handbook for Urea Cycle Disorders

The ASIEM Low Protein Handbook for Urea Cycle Disorders

Here is a link to the manual online. It’s a tremendously informative manual- and VERY comprehensive-and it’s packed with over 200 pages of info. It originated outside the US so please be advised that all info may not translate for your state. If you haven’t seen this publication before, it’s a MUST READ.

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A Urea Cycle Disorders Overview

A Urea Cycle Disorders Overview

This publication was put together by some well known UCD physicians and in conjunction with NIH (National Institute of Health). It was last updated June 2017. It gives an overview of all UCD’s as well as some other metabolic disorders. Awesome publication- check it out!

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Diffusion Tensor Imaging

Diffusion tensor imaging detects areas of abnormal white matter microstructure in patients with partial ornithine transcarbamylase deficiency.

Some interesting info and more pictures here of a group of UCD-partial OTC affected and the results found with imaging of white matter areas. Be sure to read the Conclusions portion.

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Physician’s Guide to Urea Cycle Disorders

Physician’s Guide to Urea Cycle Disorders

This is an incredible resource that provides excellent information about all UCD’s. It’s another must read!

Resources: Low Protein Food Resources

As with any medications/supplements outside the scope of your UCD treatment, be sure to include your metabolic team and/or dietician who knows your case before using these products. If your not sure if these products are a good fit for you, please consult your metabolic team. Better safe than sorry! Having said that, here’s what Amy found for us . . . Caveat Emptor!(LOL)

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PKU Perspectives

PKU Perspectives

Suppliers of low protein medical foods also commonly used by those with Urea Cycle Disorders. They have quite a selection.

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Cambrooke Therapeudics

Cambrooke Therapeudics

Cambrooke offers a complete dietary therapy for inborn errors of metabolism with the ability to mix and match Low Protein Foods with Cambrooke’s great tasting metabolic formula products.

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Maty’s

Maty’s

At Maty’s they believe in the power of Mother Nature and functional foods to help you feel better with no side effects or drug interactions. They also have organic analgesics for those who prefer not to use any of the ‘over-the-counter’ products. If that’s you, this website is worth a look.

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Nutricia

Nutricia Website: Check for reimbursement of their products in your state

Nutricia Connect

Nutricia Metabolics not only offers the EAA and the Animex products but also have customer support (for those diagnosed with a metabolic disorder) to help you get their formulas covered by insurance. They also have some recipe ideas, personal tips to manage your metabolic condition, and more. This is a very good website with some great information about metabolic conditions.

Resources: Protein Counting

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NutritionData

SELF Nutrition Data-Food and Recipe Tracker

Excellent for making your own recipes and keeping them stored (with nutrition info) for use when you wish. Keep in mind this is NOT a UCD based site, however, it’s a great way to track what your eating, how much, nutrition amounts, etc. It’s best if you input your protein contents manually because the preset ones on the site are averaged out by users, so use the actual nutrition chart info on your foods. Creating an account is free!

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USDA Food Composition Databases

USDA Food Composition Databases

Click the link above and once there, select the Food Search in the tabs across the top of the page. Foods here are alphabetically listed so you’ll have to scroll a bit. This website contains close to 10,000 different foods/drinks listed in a database which has pertinent nutrition info available for everyone- for free! Great way to quickly check protein contents (and all other info found on a food label nutrition chart). During times when your not at home- like eating out with the family, or grabbing a quick bite on the go-this site is great for taking the ‘protein guess’ out of your meals when you don’t have the nutrition labels in front of you.

Resources: Something for the “kidz”

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MediKidz Comics

MediKidz Comics (Video animation of the comic)

This link takes you to a professionally narrated version of the comic. This video was well produced and it’s like you are watching Saturday morning cartoons . . . Um, does anyone remember those? I think the kids will love it, it’s about 10 minutes long.

We want to thank Resources Coordinator, Amy Reese, R.N. for putting this together for all of us. “Thanks Amy,” we appreciate your hard work!

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​Address:
39252 Winchester Road, #107-135
Murrieta, California 92563

Phone: 918-490-3055