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ISCBH Webinars

A SERIES OF THREE ISCBH WEBINARS FOR 2025

This new series will cover the following topics:

Achondroplasia & Hypochondroplasia

Hypophosphatasia

Osteogenesis Imperfecta

For each of our webinars, we are excited to be addressing some of the issues that we all need answers to – What about the unmet needs of patients? What if there was no limit to funding?  Where have we been and where are we going?   

We’ll be looking into each topic with a futuristic lens… and welcoming plenty of engagement between our moderators and audience!  Together we can work to channel our future efforts to address those unmet needs.

The webinars will last one hour, starting with a 25 minute talk by our guest speaker, followed by a 35 minute Q&A and discussion session chaired by Professor Leanne Ward and Professor Erik Imel.

Webinar Series Convenors:

Erik Imel

Indianapolis, USA

Leanne Ward

Leanne Ward

Ottowa, Canada

'The Future of...' Webinar #1

Svein Otto Fredwall

THE FUTURE OF…

Achondroplasia & Hypochondroplasia

Dr Svein Otto Fredwall Oslo, Norway

Tuesday 17 June 2025

10:30-11:30 EST, 15:30-16:30 BST, 16:30-17:30 CEST
CHAIRS: Erik Imel & Leanne Ward

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Dr Svein Otto Fredwall

Dr Svein Fredwall is a Senior Consultant and Medical Advisor at TRS National Centre for Rare Disorders in Norway. He is also the leader of the multidisciplinary paediatric achondroplasia clinic at Oslo University Hospital Rikshospitalet, and vice president in the European Achondroplasia Forum.

Dr Fredwall defended his PhD degree in 2022 based on The Norwegian Adult Achondroplasia Study, investigating medical complications and physical functioning in adults with achondroplasia. Dr Fredwall is principal investigator and national coordinator in several clinical trials on children with achondroplasia.

Dr Fredwall has been involved in the development of European and international guidelines for achondroplasia and has been an invited speaker at a number of international conferences.

Previous Webinars

FURTHER DETAILS >

The recording of the Winter Webinar is available for viewing for ISCBH Members and can be found on the Members section of the website.

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Novo Nordisk is a leading global healthcare company, founded in 1923 and headquartered in Denmark. Our Rare Disease division is focused on generating scientific and technological breakthroughs for people living with a rare disease via the discovery and development of integrated therapeutic solutions and novel indications of established medicines in rare and ultra-rare blood, endocrine and renal disorders. Novo Nordisk employs about 50,800 people in 80 countries out of which 3.300 within rare disease.

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Kyowa Kirin strives to create and deliver novel medicines with life-changing value. As a Japan-based Global Specialty Pharmaceutical Company with a heritage of 70+ years, we apply cutting-edge science including an expertise in antibody research and engineering, to address the needs of patients and society across multiple therapeutic areas including Nephrology, Oncology, Immunology/Allergy and Neurology. Across four regions – Japan, Asia Pacific, North America and EMEA/International – we focus on our purpose, to make people smile, and are united by our shared values of commitment to life, teamwork/Wa*, innovation and integrity.

*Harmony and loop among people.

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Inozyme Pharma is a rare disease biopharmaceutical company developing novel therapeutics for the treatment of diseases driven by pathologic mineralization and intimal proliferation which impact the vasculature, soft tissue and skeleton. We are initially focused on developing an enzyme therapy to treat ENPP1 and ABCC6 Deficiencies, rare genetic diseases associated with significant morbidity, mortality, and unmet medical need.

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BioMarin is a world leader in developing and commercializing innovative therapies for rare diseases driven by genetic causes. With a 20-year history, BioMarin remains steadfast to its original mission—to bring new treatments to market that will make a big impact on small patient populations. These conditions are often inherited, difficult to diagnose, progressively debilitating, have few, if any, treatment options, and are usually ignored. Visit www.biomarin.com to learn more.

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Alexion, AstraZeneca Rare Disease, is the group within AstraZeneca focused on rare diseases, created following the 2021 acquisition of Alexion Pharmaceuticals, Inc. As a leader in rare diseases for 30 years, Alexion is focused on serving patients and families affected by rare diseases and devastating conditions through the discovery, development and commercialization of life-changing medicines. Alexion focuses its research efforts on novel molecules and targets in the complement cascade and its development efforts on hematology, nephrology, neurology, metabolic disorders, cardiology and ophthalmology. Headquartered in Boston, Massachusetts, Alexion has offices around the globe and serves patients in more than 50 countries.

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