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@ureacyclerm Profile picture

Urea Cycle Disorder

@ureacyclerm

Our vision is to shape a world where all rare conditions are understood and treated. Helping you understand, manage and talk about #UreaCycleDisorder

454Posts 426Followers 69Following
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ureacyclerm Profile Picture
Urea Cycle Disorder
 @ureacyclerm
21 Jan 2022

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

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ureacyclerm Profile Picture
Urea Cycle Disorder
 @ureacyclerm
20 Jan 2022

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

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Urea Cycle Disorder
 @ureacyclerm
19 Jan 2022

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

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Urea Cycle Disorder
 @ureacyclerm
18 Jan 2022

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

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Urea Cycle Disorder
 @ureacyclerm
17 Jan 2022

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

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Urea Cycle Disorder
 @ureacyclerm
15 Jan 2022

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

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Urea Cycle Disorder
 @ureacyclerm
13 Jan 2022

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

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Urea Cycle Disorder
 @ureacyclerm
12 Jan 2022

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

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Urea Cycle Disorder
 @ureacyclerm
11 Jan 2022

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

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Urea Cycle Disorder
 @ureacyclerm
10 Jan 2022

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

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Urea Cycle Disorder
 @ureacyclerm
7 Jan 2022

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

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Urea Cycle Disorder
 @ureacyclerm
6 Jan 2022

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

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Urea Cycle Disorder
 @ureacyclerm
5 Jan 2022

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

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Urea Cycle Disorder
 @ureacyclerm
4 Jan 2022

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

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Urea Cycle Disorder Reposted
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The Journal of Inherited Metabolic Disease
 @JIMD_Editors
31 Dec 2021

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

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Mario Cortina Borja🇪🇺
 @cortina_borja
31 Dec 2021

Our paper Clinical status, biochemical profile & mgmt of a single cohort of Pxs with arginase deficiency, with @UCLchildhealth @GreatOrmondSt NKeshavan MWood @Luiluilua RSkeath MMcSweeney MDixon MACleary EFootit & SBatzios published today @JIMD_Editors tinyurl.com/3m6t443d

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Urea Cycle Disorder
 @ureacyclerm
31 Dec 2021

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

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Urea Cycle Disorder
 @ureacyclerm
29 Dec 2021

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

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Urea Cycle Disorder
 @ureacyclerm
28 Dec 2021

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

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Urea Cycle Disorder
 @ureacyclerm
27 Dec 2021

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

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Urea Cycle Disorder
 @ureacyclerm
23 Dec 2021

Happy holidays from everyone! Remember, enjoy what you can, and be kind to yourself while you’re doing it.

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