The Foundation is working on a number of resources for patients, and you may find our informational flyers available for download below. If you have any resources that you think may be beneficial and would like to be listed, please feel free to get in touch with us here.
The Foundation has also translated some of our resources to Vietnamese. Please find it here. Quỹ cũng đã dịch một số tài liệu của chúng tôi sang tiếng Việt. Vui lòng tìm nó tại đây.
Multi-language CD Patient Booklet
The Foundation has put together a comprehensive guidebook about citrin deficiency for patients and caregivers.
The Citrin Foundation Patient Booklet has also been kindly translated into the following languages by members of our community:
- German – translated by Ms. Karoline Huemerlehner and Ms. Victoria Hahn
- Korean – translated by Mr. Yongsoo Ryu
- Vietnamese – reviewed by Dr. Nguyen Pham Anh Hoa
Please click on the respective languages below to download the PDF version of the booklet.
Age-specific Informational Flyers
Quarterly Newsletters
Emergency Card
The patient engagement team has designed a wallet-sized patient emergency card. This card provides crucial information about the patient and their condition to ensure rapid and accurate medical attention during emergencies.
Please click on the respective languages to download the emergency card.
Recipes
You may find the recipe flyers prepared by the Foundation below. You can also access the web version of our Foundation’s recipes here.
A comprehensive collection of PFC-friendly recipes designed for individuals with citrin deficiency and their families.
A basic guide for individuals with CD which outlines foods that are generally safe to eat and those that should be avoided.
The Foundation has curated Spring-inspired recipes to help our members with meal planning and keeping variety in their diets.
The Foundation has put together low-carb, Autumn-inspired recipes that are both seasonal and convenient for family meals.
A resource to help parents with planning birthdays by developing recipes that balance CD dietary requirements, flavour, and ease.
A Christmas flyer with festive, creative recipes to inspire cooking and ease holiday preparations for busy parents.
A Halloween flyer filled with creative, spooky, and fun recipes which aim to spark creativity and a love for cooking among children.
A comprehensive collection of PFC-friendly recipes designed for individuals with citrin deficiency and their families.
A basic guide for individuals with CD which outlines foods that are generally safe to eat and those that should be avoided.
The Foundation has curated Spring-inspired seasonal recipes to help our members with meal planning and keeping variety in their diets.
The Foundation has put together low-carb, Autumn-inspired recipes that are both seasonal and convenient for family meals.
A resource to help parents with planning birthdays by developing recipes that balance CD dietary requirements, flavour, and ease.
A Christmas flyer with festive, creative recipes to inspire cooking and ease holiday preparations for busy parents.
A Halloween flyer filled with creative, spooky, and fun recipes which aim to spark creativity and a love for cooking among children.
Patient Stories
Our members have shared their experiences living with citrin deficiency. If you would like to share your experiences with us, please feel free to get in touch with us here.
Please find the stories below.
“When I was in elementary and junior high school, I did not disclose to my classmates and friends that I had citrin deficiency at all.”
“We got a genetic test which revealed that we were both carriers of citrin deficiency.”
“My brother who died 11 years ago had CTLN2*.”(*Currently known as AACD)
“my ammonia levels were tested, and it was determined that I was likely to have citrin deficiency.”
The answer to my discomfort from childhood: Citrin Deficiency, the condition my child taught me about.
“regardless of the diagnosis, we didn’t really know what to do exactly, and doctors had a difficult time diagnosing me. So, for the most part, it was just experimenting a little bit. Reflecting back now, I wasn’t really aware of this kind of experimental period, it was kind of just my family allowing me to listen to my body.”
“The unexpected ICU admission where our son was diagnosed with citrin deficiency”
“Over the years we were lucky enough to meet people who helped us unconditionally. I am highly grateful to Citrin Foundation who guided us! Their friendship and support are so valuable to us, that I cannot imagine our life without them! “