The Chandler Project

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...

02/27/2026

FDA Approves Once-Weekly YUVIWEL® (navepegritide) for Children with Achondroplasia Aged 2 Years and Older

The first and only approved achondroplasia therapy to provide continuous systemic exposure to CNP over the weekly dosing interval Commercial availability expected during early part of Q2 2026 Rare Pediatric Disease Priority Review Voucher granted in connection with approval Ascendis to host investor...

02/22/2026

As we lead up to this Saturday, February 28, we want to share why we recognize the day. 🦓

The Chandler Project recognizes Rare Disease Day because and many other skeletal dysplasias are caused by genetic mutations and are associated with complex medical needs, health risks, and lifelong care.

We also acknowledge that not everyone identifies achondroplasia as a “disease,” and we respect that perspective while honoring personal identity and lived experience – identity is PERSONAL.

At TCP, your name comes first – we don’t define by diagnoses or conditions. You’re not labeled, you’re a person first.

However, within global healthcare frameworks:
• There are over 6,000 rare diseases worldwide 🌎
• Genetic mutations cause 72% 🧬
• Achondroplasia is caused by a genetic mutation, and it carries associated medical risks and complications 🩺

Because of this, we classify achondroplasia as a , disorder, and condition. Not to define identity, but to strengthen access to research, care, resources, and treatment equity.

Follow us this week as we share more leading up to Rare Disease Day!

02/17/2026

📣 Are you or someone you love living with in British Columbia, Canada? Here’s an important opportunity to share your lived experience with your provincial government! 🇨🇦

The BC Your Voice program invites individual patients and caregivers to share their lived experiences and opinions on drugs (and devices) that BC PharmaCare is considering for public funding. They have opened an opportunity for feedback on a new drug for achondroplasia.

👉🏻 If you are a BC patient, parent, or caregiver impacted by achondroplasia, please take a moment to participate today and share this with others in your province.

Your insights will help ensure that the voices of people and families in the achondroplasia community are considered as reviewers and decisionmakers evaluate funding in BC.

📝 Share your experience by February 24, 2026, at 11:59 pm. You do not need to have experience with the treatment under review to participate.

➡️ LINK IN BIO TO PARTICIPATE ⬅️

09/15/2025

📣 Are you or someone you love living with ? We want to hear from you!

The Chandler Project is conducting a survey on the impact of achondroplasia on patients and caregivers to help our advocacy work as we participate in Canada’s drug funding/reimbursement review process. Input from the survey will be used to inform a review of a new drug for achondroplasia currently under review for public funding in Canada.

Who can participate?
• Patients with achondroplasia
• Parents, caregivers, and anyone who identifies as part of a patient’s support system
(You do not need to live in Canada to take part)

Your voice will help ensure the lived experiences of patients, families, and caregivers with achondroplasia are considered by CDA reviewers and drug funding decision makers in Canada.

Take the survey now! ***link in bio*** Open until Sunday, September 28, 2025 (11:59 PM EST)

08/21/2025

"Families living with achondroplasia need new treatment options, and our community is encouraged to see TYRA stepping into this space with such dedication. TYRA's approach with dabogratinib is different—it's designed to specifically target FGFR3 —and that has generated real excitement among families and advocates. The launch of the BEACH301 trial represents important progress, and we look forward to following TYRA's work as we collectively push toward a future with more choices and better outcomes for people around the world." — Chandler Crews, Founder, Advocate, The Chandler Project

We are excited to share an important update: today we announced that the first child has been dosed in the Phase 2 clinical trial of our investigational oral therapy, dabogratinib, in . To learn more, read our press release here: https://ir.tyra.bio/news-releases/news-release-details/tyra-biosciences-announces-first-child-dosed-beach301-its-phase

This progress is only possible thanks to the contributions of the families, caregivers, healthcare providers, and advocates who we have the privilege to connect with and learn from. Together, we are taking the next step in advancing research to move .

Tyra Biosciences

07/24/2025

Such an inspiring time at this year’s Annual Achondroplasia & Skeletal Dysplasia Research Conference (PHARMACHON), hosted by The Chandler Project.

We left feeling more connected and more informed, thanks to the powerful insights shared by individuals living with skeletal dysplasia and advocacy leaders.

Michelle Norton, Ph.D., RN, our Senior Director of Medical Affairs, Skeletal Dysplasias, presented “Targeting FGFRs: Our Path to Today and Vision for Tomorrow,” highlighting how both science and lived experience continue to guide our work.

A heartfelt thank you to Chandler Crews for creating a collaborative space to share perspectives, build connections, and learn together.