CRDC, Family Engagement Form

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Thank you for being part of this movement. This form is designed to capture your lived experience and ideas. Your input will directly guide support programs, advocacy efforts, research progress, and meaningful collaboration between families, scientists, and clinicians.
We have many paths, but one purpose, to progress through unity. In unity we find strength.

SECTION 1: FAMILY - Family & Patient Background

Your name:

Relation to Patient:

Patient’s First Name (optional):

If you have more than one child with rare disease, please list all and assign each a number to be used in the following answers.

Age of Patient:

Diagnosis (if known):

Year of Diagnosis:

How many doctors did you see before receiving an accurate diagnosis?

If no diagnosis yet, how many doctors have you seen so far?

Your Home Location (City, Country):

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