chILD Foundation - Childrens Interstitial and Diffuse Lung Disease

06/14/2026

Summer Adventures Made Safer with the ⚕️ CamRARE Passport: A Simple, Free Tool That Speaks for Your Child

When your child has a rare lung disease, explaining their needs, especially in new or emergency settings, can be overwhelming. The CamRARE “This Is Me” Rare Patient Passport helps make those moments easier.

This free, printable PDF is designed to clearly share what matters most about your child’s care, all in one place:
✨ Diagnosis, medications & allergies
✨ “My normal” and emergency information
✨ Key medical details clinicians need fast
📄 Use it as an A4 page or fold it into a lanyard wallet
🧒 Helpful for children of any age, anywhere in the world
💛 Created with families, patients, and healthcare professionals
🌍 Already used in 60 countries
📊 Over 2,900 families have applied
🆕 Updated version launched March 2024, shaped by real patient & clinician feedback

Whether you’re heading to school, clinic, hospital, or traveling, this passport helps your child be seen, understood, and cared for.

🔗 Register here for your Rare CamRARE Passport: https://champ.ly/B8AfAQAI

Thank you to for making this happen!

Patient Passport - CamRARE (Cambridge Rare Disease Network)

06/14/2026

👭 👬 Hi friends! Second Sunday Social starts in 1 hour! 👭 👬

Just a friendly reminder that our Second Sunday Social Zoom gathering begins in one hour. If you're part of the chILD / pediatric lung disease community and looking for connection, we’d love to have you join us.

This is a relaxed, supportive space to connect with other families who understand the ups and downs of the chILD/rare lung disease journey. Whether you want to share, ask questions, or simply listen, you’re welcome here.

✨ Community
✨ Conversation
✨ Shared experiences

🕓 Starting in 1 hour — 4:00 PM EST
📅 Held every 2nd Sunday of the month

🔗 Join us on Zoom: https://champ.ly/oeCO0qbL

Drop in whenever you can, we’d love to see you! 🤍

Zoom is the leader in modern enterprise cloud communications.

06/13/2026

🌻 Join Us Tomorrow for Our Second Sunday Social Zoom Meeting
🤍 Second Sundays are for connection. Join us for Second Sunday Social, a relaxed, supportive space to connect with other families who understand your chILD journey.

✨ Community
✨ Conversation
✨ Shared experiences

📅 When: Every 2nd Sunday of the Month
Time: 4:00 PM EST
Join via Zoom: https://champ.ly/oeCO0qbL

Next Meeting is tomorrow at 4pm EST!

Because community matters. 🤍

Zoom is the leader in modern enterprise cloud communications.

06/10/2026

🚐 Hi friends! Welcome Wagon Wednesday starts in 1 hour! 🧸

If you’re a parent in the chILD / rare lung disease community and looking for connection, this is a gentle reminder that Welcome Wagon Wednesday starts in one hour. 💛

This informal gathering is a space created by parents, for parents, whether you’re brand new to the chILD community, recently diagnosed, or just looking to connect with others who understand the journey.

✨ Meet other families
✨ Share stories and experiences
✨ Ask questions or just listen
✨ Find support from people who get it

🕖 Starting in 1 hour — 7:00 PM EST
📅 Held every 2nd Wednesday

🔗 Join us on Zoom: https://champ.ly/oeCO0qbL

Come as you are, even if you can only stay for a few minutes. We’d love to see you there. 💛

#

Zoom is the leader in modern enterprise cloud communications.

06/09/2026

🚐 Welcome Wagon Wednesdays Tomorrow!🧸
💛 Welcome Wagon Wednesdays are here for you.
New to the community or just needing connection? Join us for Welcome Wagon Wednesday, a space created by parents, for parents.
✨ Meet other families
✨ Share stories and support
✨ Feel less alone
📅 Held: Every 2nd Wednesday
Time: 7:00 PM EST
🔗 Join via Zoom : https://champ.ly/oeCO0qbL

Next meeting is tomorrow at 7pm EST!

You’re always welcome. 🧸

Zoom is the leader in modern enterprise cloud communications.

06/01/2026

🌞 What's something unique and wonderful about your child that rare lung 🫁 disease can never diminish? Share their light with us below in the comments!

05/21/2026

Travel Safely this coming Memorial Day Weekend with the ⚕️ CamRARE Passport: A Simple Tool That Speaks for Your Child

When your child has a rare lung disease, explaining their needs, especially in new or emergency settings, can be overwhelming. The CamRARE “This Is Me” Rare Patient Passport helps make those moments easier.

This free, printable PDF is designed to clearly share what matters most about your child’s care, all in one place:
✨ Diagnosis, medications & allergies
✨ “My normal” and emergency information
✨ Key medical details clinicians need fast
📄 Use it as an A4 page or fold it into a lanyard wallet
🧒 Helpful for children of any age, anywhere in the world
💛 Created with families, patients, and healthcare professionals
🌍 Already used in 60 countries
📊 Over 2,900 families have applied
🆕 Updated version launched March 2024, shaped by real patient & clinician feedback

Whether you’re heading to school, clinic, hospital, or traveling, this passport helps your child be seen, understood, and cared for.

🔗 Register here for your Rare CamRARE Passport: https://champ.ly/B8AfAQAI

Thank you to for making this happen!

Patient Passport - CamRARE (Cambridge Rare Disease Network)

05/13/2026

Here at chILD, we hold the upcoming "Walk of Remembrance" hosted by the Kaleo Walker Foundation close to our hearts. In just 4 days, on May 17th in Queens, NY, this beautiful event will provide a compassionate space for families and individuals to honor their loved ones and share in healing. With the theme "Even the Heavens Need a Little Trouble Now and Then," participants will remember those they've lost and share heartfelt messages on the Memory Wall. Food, snacks, live music and a raffle will also be included! ❤️ 👼

If you're in the area or able to join, we encourage you to participate in this wonderful opportunity. Learn more about the event and how you can be part of it: https://champ.ly/uYXT091K

05/12/2026

🚐 Welcome Wagon Wednesdays Tomorrow!🧸
💛 Welcome Wagon Wednesdays are here for you.
New to the community or just needing connection? Join us for Welcome Wagon Wednesday, a space created by parents, for parents.
✨ Meet other families
✨ Share stories and support
✨ Feel less alone
📅 Held: Every 2nd Wednesday
Time: 7:00 PM EST
🔗 Join via Zoom : https://champ.ly/8OrvK8Il

Next meeting is tomorrow at 7pm EST!

You’re always welcome. 🧸