RARE Patient Passport

About the passport

What is the RARE Patient Passport?

The RARE Patient Passport was developed by CamRARE — a rare disease organization based in Cambridge, UK — working alongside families and clinicians. It is a customizable document that captures your child's most important medical and care details in one place.

The chILD Foundation has partnered with CamRARE to create a chILD Foundation–branded version of the passport, tailored for children with interstitial and diffuse lung disease.

What's inside

What does the passport include?

The passport is a fillable document where you record your child's:

• Diagnosis and medical history
• Current medications and dosages
• Emergency contacts and primary care team
• Oxygen requirements and equipment
• Allergies and sensitivities
• Key care instructions for providers unfamiliar with chILD

How to get yours

Get your chILD Foundation passport

1. 1 Click the button below to visit the CamRARE RARE Patient Passport page.
2. 2 Select "chILD Foundation" from the dropdown menu to get the version customized for our community.
3. 3 Fill in your child's information. The document is fully editable — update it any time medications or care details change.
4. 4 Save a digital copy and print one to keep with your child's medical bag, backpack, or travel kit.