Connecting Families is grateful to our “friends helping friends” providing great resources!
THERE ARE RESOURCES BELOW FOR THOSE AFFECTED BY HURRICANE HARVEY, HURRICANE IRMA, and those in PUERTO RICO!
We are listing resources here to bring more information to help meet needs. Education, awareness, and support are key to UCD’s and we will be adding more as we go. Bear with us, this page is updated as we receive more information .
Please take a moment, and view these resources as another “tool” to put in your “toolbox”. Thank you in advance for your support of our friends and partners!
Please use our “contact us” form in the main menu, or call us if you have any questions.
HORIZON PHARMA/NORD/HURRICANE HARVEY/IRMA RESOURCES FOR THOSE WITH UCD’S ANYWHERE IN THE UNITED STATES
(including, Alaska, Hawaii, and Puerto Rico)
For those with UCD’s affected by the recent hurricanes, and/or other natural disasters there is help for you! We posted on our FaceBook (Connecting Families UCD Foundation), here are some links to get you some help now!
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:
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.
If you are having trouble opening the PDF please use the “contact us” page on our website at ucdfamily.org and we will send it to you directly or you can see it posted on our Facebook page at Connecting Families UCD Foundation. Click the blue link right below here for contact info to apply.
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 (NEW TRIAL/STUDY)
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!NORDDisasterReliefInfoTX