Join our community

Citrin Foundation is building a patient community.

Currently, not a lot has been understood about citrin deficiency. Registering with our patient community will help scientists better understand the condition and its manifestations, and allow doctors to provide appropriate treatments for their patients. Understanding the needs of the patients will also allow us to suggest more tips to help you manage citrin deficiency in your day-to-day life.

As part of our patient community, we will also be able to share with you:

Invitations to events we host, and clinical trial recruitment
Newsletters reporting new findings from research and related news
A complimentary copy of the English version of Citrin Deficiency book, written by Prof. Saheki
Interactive global patient/family peer support group
1 -1 Support Calls

You will also be able to opt-in to join our global peer support community where you will be able to communicate with other parents/adult patients in an informal WhatsApp group, participate in digital peer support meetings facilitated by the Foundation, and have a chance to have a regular point of contact with the Foundation’s patient engagement team.

Before opting-in to join our peer support group, please read our community values and guidelines here:

Peer Support Group – Community Values and Guidelines

Please be assured that all information you provide will be protected under our Personal Data Privacy Policy and will only be used on an anonymous basis.

Please register below to join our patient community and contact us here if you have any questions.

Register here

Contact Person

First name *

Last name *

Email address *

I am... *

How are you related to the patient? *

Would you like to join the Peer Support Group for Parents? *

Would you like to join the Peer Support Group Adult CD Patients? *

WhatsApp Number *

Please list any topics you would like to be covered in peer support meetings

Country of Residence *

City/State *

Would you like to receive the English Version of the Citrin Deficiency book written by Professor Takeyori Saheki? *

I would like to receive the Citrin Deficiency book (English version) in *

Address (for book mailing) *

Patient

Patient's Year of Birth *

Age when patient was diagnosed *

Patient's Ethnicity *

Attending Doctor and the Hospital the patient goes to *

Has the patient received an NICCD Diagnosis? *

Has the patient received a CTLN2 Diagnosis? *

What are the current symptoms or concerns for the patient?

Was a genetic test performed to confirm the diagnosis?

Variants, if known

Current treatments/medications/supplements if any, and the dosage?

Does the patient have any food preferences?

What are the patient's likes and dislikes? *

Do you have a second family member with citrin deficiency? *

Patient's Year of Birth *

Age when patient was diagnosed *

Patient's Ethnicity *

Attending Doctor and the Hospital the patient goes to *

Has the patient received an NICCD Diagnosis? *

Has the patient received a CTLN2 Diagnosis? *

What are the current symptoms or concerns of the patients

Was a genetic test performed to confirm the diagnosis?

Variants, if known

Current treatments/medications/supplements if any, and the dosage?

Does the patient have any food preferences?

What are the patient's likes and dislikes? *

Do you have a third family member with citrin deficiency? *

Patient's Year of Birth *

Age when patient was diagnosed *

Patient's Ethnicity *

Attending Doctor and the Hospital the patient goes to *

Has the patient received an NICCD Diagnosis? *

Has the patient received a CTLN2 Diagnosis? *

What are the current symptoms or concerns of the patients?

Was a genetic test performed to confirm the diagnosis?

Variants, if known

Current treatments/medications/supplements if any, and the dosage?

Does the patient have any food preferences?

What are the patient's likes and dislikes? *

Do you have a fourth family member with citrin deficiency? *

Patient's Year of Birth *

Age when patient was diagnosed *

Patient's Ethnicity *

Attending Doctor and the Hospital the patient goes to *

Has the patient received an NICCD Diagnosis? *

Has the patient received a CTLN2 Diagnosis? *

What are the current symptoms or concerns of the patients

Was a genetic test performed to confirm the diagnosis?

Variants, if known

Current treatments/medications/supplements if any, and the dosage?

Does the patient have any food preferences?

What are the patient's likes and dislikes? *

Please click here to read our consent agreement.

Consent agreement *

By checking this box, you confirm that you are providing consent as per the agreement above with regard to the data submitted through this form.

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Join our community