Undiagnosed chILD Working Group
The chILD Foundation is launching a working group to build the foundation for a pilot support program for families living without a diagnosis. This group will bring together families, clinicians, and researchers to define what that program looks like and how to make it real. Time commitment and schedule details are being finalized — complete this form and we will reach out.The chILD Foundation is launching a new working group to develop a real transition support program for young people with chILD moving from pediatric to adult care. This group will bring together patients, families, and professionals to define the program and shape the research questions that will guide it. Details on time commitment and meeting schedule are being finalized — complete this form, and we will be in touch.
Section 1: Contact Information
Name
*
First Name
Last Name
Email
*
example@example.com
Address
Street Address
Street Address Line 2
City
State / Province
Postal / Zip Code
Please Select
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Other
Country
Section 2: Your Role
Select the option that best describes you:
I am a:
*
chILD Patient (age 13-17)who is undiagnosed or still seeking a diagnosis (parent or guardian permission is required to participate)
Young adult (age 18 or over) who is undiagnosed or still seeking a diagnosis
Parent or caregiver of a patient who is undiagnosed or still seeking a diagnosis
Pediatric Pulmonologist
Adult Pulmonologist
Geneticist or genetic counselor
Rare Disease or Undiagnosed disease specialist
Mental health professional
Social worker or Care Coordinator
Researcher in diagnostics or bioinformatics
Patient Advocacy Organization Representative
Other
If you are a patient aged 13-17, please list the name(s) of you parent(s) or guardian(s) and their email.
If you are any kind of medical professional or researcher, please list your organization/place of work and your job title.
Section 3: Your Experience
How long have you (or your child) been seeking a diagnosis?
Less than 1 year
1-2 years
3-5 years
More than 5 years
Not applicable (professional)
Briefly describe your experience with or interest in undiagnosed chILD:
Which of the following areas are you most interested in working on?
Emergency care protocols for undiagnosed patients
Referral and Case review pathways
Re-evaluation and reassessment protocols
Mental health and chronic uncertainty support
Genetic reanalysis and new diagnostic discoveries
Caregiver support and navigation resources
Research and data collection for undiagnosed populations
Open to any area
Section 4: Additional Information
Is there anything specific you hope this working group will address?
How did you hear about us?
Please Select
chILD Foundation email or newsletter
Colleague referral
chILDRN referral
Social Media
Friend or Family
Other
Submit
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