chILD Foundation - Childrens Interstitial and Diffuse Lung Disease

10/19/2026

Wherever Fall Takes You, Bring 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)

10/14/2026

🚐 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. 💛

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Zoom is the leader in modern enterprise cloud communications.

10/14/2026

We’re proud to see the chILD Foundation represented at the Rare Disease Summit in Boston! 💙

Pictured are Ann Gettys, the chILD Foundation’s Director of Programs, alongside Renee and Brian Farrell, parents of an undiagnosed chILD patient. We’re also excited to welcome Renee as the chILD Foundation’s newest Board member!

This year’s summit focused on research-informed care, genomics, artificial intelligence (AI), and finding ways to reduce the diagnostic odyssey for children and families affected by rare diseases.

Together, we’re working toward greater understanding, better care, and hope for families navigating the challenges of pediatric rare lung disease. 🩷

10/13/2026

🚐 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. 🧸

Zoom is the leader in modern enterprise cloud communications.

10/11/2026

👭 👬 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.

10/10/2026

🌻 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.

10/08/2026

🎉 Big news for the chILD community!

Congratulations to Dr. Benjamin Raby and the Division of Pulmonary Medicine at Boston Children's Hospital on being selected for Anthropic's AI for Science program! The chILD Foundation is proud to join this work as the project's patient-engagement and dissemination partner.

The project will use Anthropic's AI model, Claude, to help uncover the genetic causes of childhood interstitial and diffuse lung disease (chILD).

💙 Why this matters for families
chILD includes more than 200 rare lung conditions, and for most children the genetic cause is still unknown. A genetic diagnosis can open the door to targeted treatment, instead of broad therapies with difficult side effects.

🔬 A new approach
Each chILD condition is so rare that there are too few patients to study any one of them on its own. Using de-identified medical records from more than 26,000 patients, Claude will help turn years of clinical notes, imaging reports, and lung function tests into structured data. Researchers can then look for shared patterns and genes across the full spectrum of chILD, including children whose symptoms are still evolving.

Work that would take researchers years by hand can now happen in months.

🤝 Our role
We will bring families and clinicians together to make sure the findings reflect what matters to patients, and we'll share results with our family, physician, and research networks.

Thank you to Anthropic for investing in rare disease science, and congratulations to the full team: Dr. Raby, Dr. Noga Arwas, Dr. Alicia Casey, Dr. Chase Yakaboski, and Dr. Jason Flannick!

10/07/2026

One thing I wish more people knew about living with a rare lung disease like chILD is ___________. Fill in the blank and share your thoughts. Let’s raise awareness together this month! 🌟

10/05/2026

10/02/2026

Happy World Oxygen Day! 🫁💙

More than 1.5 million people in the U.S., including many children with chILD, rely on supplemental oxygen to breathe, go to school, and live full lives. But getting the right type and amount of oxygen is too often delayed or out of reach.

The bipartisan SOAR Act (H.R. 2902 / S. 1406) would help fix that. This year, more than 300 patients and advocates, including chILD Foundation families, held over 600 meetings with Congress to push for its passage. The chILD Foundation is part of the national SOAR Act Coalition, and this year we took chILD families' stories to Capitol Hill and joined 22 organizations urging Congress to pass SOAR before year's end.

With 69 House and 9 Senate sponsors, SOAR has momentum. Now it's time for Congress to pass it before the end of the year. 🌬️

💙 To every chILD family managing tanks, tubing, and concentrators: we see you, and we're fighting for you.

💙 Share this post to help spread the word about oxygen access.