The Chandler Project

06/29/2026

BridgeBio Announces Publication in The New England Journal of Medicine of Phase 3 PROPEL 3 Trial of Oral Infigratinib in Children Living with Achondroplasia — https://investor.bridgebio.com/news/news-details/2026/BridgeBio-Announces-Publication-in-the-New-England-Journal-of-Medicine-of-Phase-3-PROPEL-3-Trial-of-Oral-Infigratinib-in-Children-Living-with-Achondroplasia/default.aspx

- Phase 3 PROPEL 3 data published today in NEJM were simultaneously presented at ICCBH in a late-breaking oral presentation; presentation includes new arm span Z-score data showing a statistically significant improvement versus placebo (LS mean +0.37 SD; p

06/19/2026

For the first time, and will present their respective treatment pipelines directly to families in the United States at the 8th Annual Achondroplasia & Skeletal Dysplasia Research Conference

These two companies represent distinct therapeutic approaches, both focused on advancing treatment options for achondroplasia:
• Abbisko’s oral FGFR2/3 inhibitor (ABSK061)
• Ribomic’s RNA aptamer therapy (RBM-007)

This is a rare opportunity to hear directly from the companies developing these therapies, ask questions, and gain insight into what’s ahead in the achondroplasia treatment landscape.

IMPORTANT: This conference is IN-PERSON ONLY. Virtual attendance will not be available.

Join us for a weekend dedicated to research, education, and the future of skeletal dysplasia care.

REGISTER TODAY: https://thechandlerproject.org/conference/

Questions? Send us a DM or email [email protected]

06/13/2026

Our 8th Annual Achondroplasia & Skeletal Dysplasia Research Conference is what dreams are made of! ✨

When it comes to new research, emerging treatments, and understanding what’s next, it can sometimes feel like you’re searching the world and never quite figure it out… but not at this conference.

Here, families come together with physician experts, researchers, and leading pharmaceutical and biotech partners to turn questions into conversations, uncertainty into understanding, and hope into possibility.

⭐️ REGISTRATION IS OPEN! ⭐️

Join us September 11–13, 2026 at the Drury Plaza Hotel Orlando - Disney Springs Area ($209/night) for a weekend dedicated to learning, connection, and progress.

You’ll have the opportunity to:
🔬 Learn how current and emerging therapies work
📊 Understand real research outcomes and trial data
🤝 Connect directly with experts, researchers, pharmaceutical partners, and fellow families

The PHARMACHON session will include featured presentations from:
— Abbisko (NEW THIS YEAR!)
— Ascendis Pharma
— BioMarin Pharmaceutical Inc.
— BridgeBio
— Ribomic (NEW THIS YEAR!)
— Tyra Biosciences

Other presentations and sessions include:
🦴 Orthopedic treatment options
🩺 Anesthesia considerations unique to skeletal dysplasia
📐 Hands-on workshop on accurate measuring, charting, and interpreting proportion & growth velocity
🚙 Car seat safety testing and real-world solutions
…and more!

YES, THERE WILL BE A KIDS ROOM ☺️

Whether you’re newly diagnosed, exploring treatment options, participating in research, or simply looking to connect with the community, this conference offers something for everyone.

This is a space built on respect, compassion, and shared learning — where families can ask questions, explore options, and access trusted information without fear of judgment.

⭐️ REGISTER TODAY —

The 8th Annual Achondroplasia & Skeletal Dysplasia Research Conference has been postponed to the weekend of Friday, September 11, to Sunday, September 13. We sincerely apologize for any inconvenience this may cause, especially to those who have already made travel plans. This decision was not made l...

05/29/2026

Earlier this week, I had the privilege of meeting 1:1 with Dr. Yoshikazu Nakamura, President and CEO of RIBOMIC Inc., a Japanese biotech company developing a pharmaceutical treatment for achondroplasia.

Yoshi shared RIBOMIC’s research focus on RBM-007 (umedaptanib pegol), an anti-FGF2 aptamer therapy, and how it compares to the two approved therapies currently on the market, as well as those still in clinical trials…I’m an advocate, not a scientist, so even after nearly a decade of advocating for achondroplasia research and hosting conferences, some of these words can still feel like a foreign language to me…but what’s beautiful about achondroplasia research is that it’s the same (almost) in almost every country (bonus points if you get the reference!)

Yoshi has graciously offered to present this information directly to the achondroplasia community through an online forum with The Chandler Project.

I'm even more excited to share that RIBOMIC will have a presence at our 8th Annual Conference this September in Orlando – click the link below to st𝗮𝗰𝗵𝗼𝗻nected (stay connected) on ‘A Chance with Dr. Yoshi’ and to be the first to know about registration!

https://chandler.myflodesk.com/k4hyyh3n95

05/25/2026

Trying to access Voxzogo in Canada? Register today for the final session in our three-part Advocacy Education Series: Time to Take Action! Using Your Advocacy Tools.

This webinar is designed for Canadian families navigating treatment access and reimbursement challenges.

In this session, we’ll dive into practical strategies to help families advocate for access, whether you’re connecting with decision-makers in Canada or working to create change within your province or healthcare system.

In this session, we’ll dive into practical strategies to elevate your advocacy, whether you’re connecting with decision-makers in Canada or influencing change in your own country.

Building on the concepts from Session #2, this webinar will walk you through:
✅ Ways to engage with government decision-makers
✅ Resources to communicate clearly and confidently with advocacy targets
✅ Overcoming challenges when faced with resistance or unresponsiveness

Whether you’re just beginning the access journey or have been advocating for months, this session will equip you with concrete, actionable tools you can start using right away to help push forward meaningful change for Canadian families seeking Voxzogo treatment.

Register here: https://us06web.zoom.us/webinar/register/WN_HhiLdwpHS4SGHLZVoVAyyQ

Step into your advocacy role with purpose - and take action with confidence.

This series has been initiated and sponsored by BioMarin Pharmaceutical Inc.

04/22/2026

Do you want to learn how your voice can help create real change for the community and beyond?

Then join us on Tuesday, May 5 at 12 PM ET for part two of our three-part Advocacy Education Series: Your Voice Matters How to Become an Effective Advocate

Building on concepts introduced in webinar 1, this session explores the foundational elements of advocacy - what it is, why it matters, and how it can influence public funding decisions.

Register today to learn:
➡️ What advocacy means and why community voices matter
➡️ How to clearly define your advocacy goals
➡️ How to build a strategic, step-by-step advocacy plan
➡️ How to identify your advocacy targets
➡️ How to craft and share your personal story in a way that resonates

Didn’t attend our first webinar? No problem! Each session stands on its own and adds to your overall advocacy journey.

Register today https://us06web.zoom.us/webinar/register/WN_19sU3MvSQ4mcsLVP2CQv6Q

04/07/2026

Join us this Thursday, April 9 at 7 PM ET for an engaging and informative conversation with Dr. Will Charlton, Senior Vice President of Clinical Development of Skeletal Dysplasias at Tyra Biosciences.

This webinar will explore dabogratinib, an investigational therapy currently in Phase 2 development, and the BEACH301 clinical study. Designed to target the underlying FGFR3 pathway, Tyra’s approach aims to address long-term complications and improve quality of life for individuals with skeletal dysplasias, including achondroplasia.

Tyra Biosciences, Inc. is a clinical-stage biotechnology company focused on developing next-generation precision medicines that target large opportunities in FGFR biology.

Register now: https://us06web.zoom.us/webinar/register/WN_sAiOwBT_TzGFvNr3zrTf7w

03/27/2026

🌍 Whether you’re advocating in Canada or anywhere in the world, understanding how treatments are approved and funded is the first step towards creating change.

Join The Chandler Project on Tuesday, March 31 for the first webinar in our three-part Advocacy Education Series: How Drugs are Approved & Funded in Canada

This foundational webinar will help people and families living with achondroplasia understand:
✅ How treatments are reviewed by Health Canada
✅ How public (government) funding decisions are made
✅ Where advocates can influence these processes

Join us to better understand the processes that shape access to treatments in Canada.

Register now: https://us06web.zoom.us/webinar/register/WN_EHNMiTM2S6iUKEF5cPxLNg

03/27/2026

Wyatt Brackney, a 6-year-old in Arvada, thrives in school thanks to supportive accommodations for achondroplasia from Children's Hospital Colorado.

03/12/2026

Registration is now open for the 8th Annual Achondroplasia & Skeletal Dysplasia Research Conference hosted by The Chandler Project! 🦋

📍 May 22–24, 2026
📍 Drury Plaza Hotel Orlando – Disney Springs
🔗 Register here: https://thechandlerproject.org/conference/

This one-of-a-kind weekend brings together patients, families, physicians, researchers, and leading pharmaceutical & biotech partners to share the latest advancements in achondroplasia and skeletal dysplasia research. 

Attendees will hear real research outcomes and clinical trial updates from companies including:
• Ascendis Pharma
• BioMarin Pharmaceutical
• BridgeBio Pharma
• Ribomic (NEW this year)
• Tyra Biosciences 

The weekend will also include expert presentations and hands-on workshops, such as:
* Orthopedic treatment options
* Anesthesia considerations unique to skeletal dysplasia
*A hands-on workshop on measuring and tracking growth & proportions
* Car seat safety testing and real-world solutions
* And more. 

Whether you’re a parent, patient, clinician, researcher, or advocate, this conference is designed to connect our community with the science, experts, and conversations shaping the future of care.

The full conference schedule will be released soon, so be sure to register now to secure your spot.

Register here: https://thechandlerproject.org/conference/

We hope to see you in Orlando!

Register for our 7th Annual Achondroplasia & Skeletal Dysplasia Research Conference: PHARMACHON – Saturday, July 12, at Convene 100 Stockton (40 O'Farrell Street, San Francisco, CA 94108). This event explores the cutting edge of clinical trials, drug development, and more for achondroplasia, hypoc...