Urea Cycle Disorder

See how others are living with UCD and share your experiences at Raremark. Head to our website to become a member: bit.ly/3fAID68 #UCD #UreaCycleDisorder #UreaCycle

See how others are living with UCD and share your experiences at Raremark. Head to our website to become a member: bit.ly/3AeCXIt #UCD #UreaCycleDisorder #UreaCycle

What's the cost of caring for a family member with a rare disease, and what support is out there? We share some thoughts and resources: bit.ly/3AeCXIt #MakeTheRareReal #UCD #UreaCycleDisorder #UreaCycle

Which song lyrics capture your experience living with a rare disease? Here's what Raremark members said: bit.ly/3nB1KkY

Deciding whether to tell others about your condition can be tough, especially at work. Learn about the pros and cons of letting your co-workers know: bit.ly/3nBwRwR #MakeTheRareReal #UCD #UreaCycleDisorder #UreaCycle

Early Access Programs offer a way to access some drug treatments before they’ve been approved for sale. Learn more about them here: bit.ly/33upW0Y

Do you have trouble remembering what to talk to your doctor about, or what they tell you? Here are some tips to help you keep track: bit.ly/33cjiwO

What is genetic testing? We spoke to specialists to find out: bit.ly/3zRAJyD

Here are a few things you can do to prevent a hyperammonemic crisis: bit.ly/3taEgXw #UCD #UreaCycleDisorder #UreaCycle

Early Access Programs offer a way to access some drug treatments before they’ve been approved for sale. Learn more about them here: bit.ly/3qcxuPa

What advice would you give to someone who just got diagnosed with a UCD? Sign up or log in to Raremark and share your answer: bit.ly/3eYO3HZ #UCD #UreaCycleDisorder #UreaCycle

If you don’t understand what your doctor’s saying, ask – and above all, trust your feelings. Learn more about advocating for yourself: bit.ly/3n2jENe

@TechieSciGuy Great advice, Chris!

@ureacyclerm For a new UCD diagnosis, searching the internet is traumatizing. You'll find some good stuff, and some horrible stuff. Make sure you follow up with a chat with your doctor and ask what info is accurate for your specific situation.

Learning about the experiences of people in a similar position can be really powerful. Here are a few ways you can find patient communities: 1. Search your disease on Facebook or Google 2. Join a website like raremark.com

Let's chat! It's a new year, full of new opportunities. What would you love to achieve this year?

New #openaccess #JIMDReports article on Arginase deficiency, a less commonly discussed #UreaCycleDisorder @ureacyclerm @UCDConsortium

Happy new year ✨ ✨✨ We hope 2022 brings you plenty of opportunities for joy, self-care, and memories to cherish.

Now that we're nearing the end of the year, let's take a moment to reflect on the positive things that happened this year. Here are 7 victories worth celebrating: bit.ly/32jpfaD

We’re the authors of our own lives. There are chapters still to be written.

Asking for help from the people who care about you is your gift to them – it gives them a way to feel useful. Here are some ways to ask for help, or to give it: bit.ly/3Hab7j3