PHARMACHON
The Chandler Project’s 5th Annual Achondroplasia Research Conference, PHARMACHON, successfully attracted a diverse audience, with attendees ranging from individuals with achondroplasia and other skeletal dysplasias to patient advocacy groups (PAGs), parents/caregivers, physicians, healthcare industry professionals, and biotech and pharmaceutical companies.
The conference took place June 16-18, 2023, in Chicago, Illinois, where, for the first time in the United States, six pharmaceutical companies [BioMarin*, QED Therapeutics*, TYRA Biosciences*, Ascendis Pharma*, Sanofi, and Pfizer*] within the achondroplasia and skeletal dysplasia market, were in the same room as patients, parents, caregivers and physicians sharing about their respective product on market, new research, upcoming data, failed program, and more. *Sponsored the event
Attendees with achondroplasia ranged in age from 2 to 30 years old. Of the parents and caregivers in attendance, one had a newborn (under 3 months old) with achondroplasia. In addition to The Chandler Project, four other PAGs worldwide were represented at the conference – ACONAR Acondroplasia Argentina, Fundacion ALPE, Instituto Nacional De Nanismo, and Peque?as Personas Latinas. In the accordions below, learn about our fellow PAG friends!
ACONAR is a Civil Association that was born in 2011, in Mar del Plata, Province of Buenos Aires, with the aim of promoting greater contact, information, guidance and support among people with Achondroplasia and other Skeletal Dysplasias that cause Dwarfism (ADEE).
Fundacion ALPE‘s mission is to improve the quality of life of all people with ADEE (Achondroplasia and other Skeletal Dysplasias with Dwarfism) and their families.
Instituto Nacional De Nanismo emerged, in 2020, from the need to have a formal structure that would support and structure the growing actions and activities promoted by the #somosTODOSgigantes movement.
Peque?as Personas Latinas purpose is to integrate any and all short people in Colombia and the world to talk about medical concerns, day-to-day life, family support and many other topics of great importance and interest that teach us how wonderful our lives are.
The conference provided insights into the latest research and data surrounding pharmaceutical developments and surgical advancements for treating achondroplasia and skeletal dysplasias from leaders and expert physicians, including Drs. Ravi Savarirayan, Janet Legare, Shawn Standard, and Philippe Backeljauw.
Dr. Ravi Savarirayan
Dr. Janet Legare
Dr. Shawn Standard
Dr. Philippe Backeljauw
Two main highlights from the conference were the keynote presentation delivered by Dr. Savarirayan and a Q&A panel delivered in a town hall format. In the keynote, Dr. Savarirayan, a world-renowned expert in genetics and skeletal dysplasia, presented for over an hour on new treatment options for genetic bone disorders, where he shared valuable insights into emerging therapies and their potential impact on the achondroplasia and skeletal dysplasia community. The panel Q&A allowed participants to engage in a deeper conversation on research and development surrounding pharmaceutical treatments for achondroplasia.
The Chandler Project is pleased to share an overview of Dr. Ravi’s presentation and Pharmacokinetics of BioMarin’s VOXZOGO™? from Victoria Garcia, RN. To view these overviews, click here.