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, patient advocacy groups (PAGs), parents/caregivers, physicians, healthcare industry professionals, biotech and pharmaceutical companies.
The conference took place June 16-18, 2023 in Chicago, Illinois where for the first time ever, 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 from ages 2 to 30 years old. Of the parents/caregivers in attendance, one had a newborn with achondroplasia. Five global PAGs represented at the conference included: The Chandler Project, ACONAR Acondroplasia Argentina, Fundacion ALPE, Instituto Nacional De Nanismo, and Pequeńas Personas Latinas.
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.
Pequeńas 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 treatment of achondroplasia and skeletal dysplasias from leaders and experts within the field. Physcian experts included Drs. Ravi Savarirayan, Janet Legare, Shawn Standard, and Philippe Backeljauw.
dr. ravi Savarirayan
Group Leader of Molecular Therapies, Murdoch Children’s Research Institute
dr. janet Legare
Pediatrician, University of Wisconsin School of Medicine and Public Health
dr. shawn standard
Head of Pediatric Orthopedics, International Center for Limb Lengthening
dr. Philippe Backeljauw
Pediatric Endocrinologist, Cincinnati Children’s Hospital Medical Center
Two of the 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.
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