2024 RESEARCH CONFERENCE

achondroplasia & skeletal dysplasia research conference

The Achondroplasia & Skeletal Dysplasia Research Conference, hosted by The Chandler Project, brings together patients, parents and caregivers, physicians, researchers, and pharmaceutical and biotech companies to engage and network with one another in a safe environment to openly discuss the latest research and developments surrounding pharmaceutical treatment options and advances in surgical treatment for achondroplasia and other skeletal dysplasias.

first-time scholarship

WHEN:

Friday, June 28 – Sunday, June 30, 2024

WHERE:

Royal Sonesta Harbor Court
550 Light Street, Baltimore, MD 21202

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This event equips attendees with the opportunity to gain insight into new research and developments directly from investigators, learn about the science behind FDA-approved treatments and potential treatments currently in the pipeline, and see how they differ from others. In addition, attendees also learn about advancements in surgical treatment options (e.g., limb lengthening).

One of the most meaningful and unique takeaways from this event is that it brings together a wide network. Patients, parents, and caregivers can directly advocate for their specific needs and the outcomes they want from research and development for achondroplasia and other skeletal dysplasias regarding treatment options. Engagement with pharmaceutical companies, researchers, and physicians enables contributions to research priorities and treatment outcomes discussions, fostering mutual understanding of community needs.

WHAT TO EXPECT:

Learn how generating the most comprehensive Data Collection Program for achondroplasia and other skeletal dysplasias can accelerate research and the development of new drugs, devices, or therapies.
Hear about one mom’s journey from an experienced registered nurse to a parent advocate.
While new research and developments in pharmaceutical treatments are developing, surgical treatment options are also advancing. Learn about the advancements in limb alignment and lengthening for achondroplasia and other skeletal dysplasias.
Hear one family’s journey with VOXZOGO (vosoritide)
Learn about the latest research and developments directly from the researchers at QED Therapeutics, Ascendis Pharma, Tyra Biosciences, and Sanofi. Learn the science behind each approved and developing treatment and how they differ.
Following the presentations from the pharmaceutical companies, Dr. Cathleen Raggio, Orthopedic Director, Kathryn O., and Alan C. Greenberg, Center for Skeletal Dysplasias at Hospital for Special Surgery, will moderate a Q&A panel with the companies.

WHAT’S THE ‘HYP’?! WHAT’S NEW THIS YEAR:

We are so hyped to dedicate undivided time to hypochondroplasia. For so long, hypochondroplasia has been looked at under the same microscope as achondroplasia, resulting in patients, parents, and caregivers feeling like they aren’t receiving adequate care for it specifically. Join us on Sunday, June 30, to learn about new research and developments surrounding HYPOCHONDROPLASIA.

Dr. Andrew Dauber, lead investigator for vosoritide in hypochondroplasia and other growth disorders, will present his latest research and findings.
BioMarin Pharmaceutical and QED Therapeutics recently announced their respective expansions into hypochondroplasia research. Hear from both companies on what this means for the community.
Hear one mother’s journey of having a child with hypochondroplasia and the unmet needs and frustrations families face when it comes to the lack of guidelines for hypochondroplasia care in a clinical setting.

faqs

At this time, this event is exclusively in-person.

REGISTRATION FEES:
$45 – Per Person, ALL ACCESS
$20 – Per Person, SUNDAY ONLY
$15 – Children (age 3-12), ALL ACCESS
(Children 2 and under are FREE)
$50 – Academia/Student – ALL ACCESS
$60 – Corporate/Industry/HCP – ALL ACCESS

HOTEL:
$189/night

HOTEL PARKING:
Overnight guests: $22 self/$35 valet
Day-parking: $10 self/$15 valet

No, the Achondroplasia & Skeletal Dysplasia Research Conference presented by The Chandler Project is a stand-alone event.

speakers

in order from A to Z. More presenters are being added! Check back for who will present from Ascendis Pharma, BioMarin Pharmaceutical, qed therapeutics, Sanofi, Tyra Biosciences, and more.

Jeffrey W. Campbell, MD

Pediatric Neurosurgeon
Nemours Children’s Hospital
Wilmington, Delaware

Andrew Dauber, MD, MMSc

Chief of Endocrinology
Children’s National Hospital
Washington, D.C.

Victoria Garcia, RN

parent advocate
mom to Julia, who is living with achondroplasia

Victoria’s notes from pharmachon ’23

Elena Muslimova MD, PhD

Medical Director, ACCEL hypochondroplasia program
QED Therapeutics*

LEARN MORE ABOUT QED THERAPEUTICS

Susana Noval Iruretagoyena

Director
ALPE Achondroplasia Foundation,
ERN BOND ePAG
Spain

learn more about Fundación ALPE

Janet Legare, MD

Pediatrician, Genetics
Director
Midwest Regional Bone Dysplasia Clinic, University of Wisconsin School of Medicine and Public Health
Madison, WI

Philip mcclure, md, faaos

Director, orthopedic surgeon
International Center for Limb Lengthening
Baltimore, MD

Laura Guido, PharmD, MBA, BCPS

Sr. Medical Director, Medical Affairs
QED Therapeutics*

LEARN MORE ABOUT QED THERAPEUTICS

Alex Niemczura, PhD

parent advocate
mom to Huddy, who is living with hypochondroplasia

follow @huddydoingthings on Instagram

Cathleen Raggio, MD

Orthopedic Director
Kathryn O. and Alan C. Greenberg Center for Skeletal Dysplasias, Hospital for Special Surgery
New York, NY

SHAWN standard, md, faaos

Head of Pediatric Orthopedics
international center for limb lengthening
Baltimore, MD

Klane White, MD

Chair, Pediatric Orthopedics
children’s hospital colorado
Founding Member, Skeletal Dysplasia Management Consortium
Aurora, CO

*Company/organization is a sponsor of the event

SPONSORS & SUPPORTERS

Interested in supporting the 2024 Achondroplasia & Skeletal Dysplasia Research Conference? Contact chandler@thechandlerproject.org for the 2024 Prospectus. Online form coming soon.