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About This Webinar

In this webinar, our orphan rare disease experts will share valuable insights on how research processes can be conducted with early patient involvement, focusing on patients' priorities and the challenges that exist across these processes.

  • Overview of the challenges in developing safe and effective therapeutics for patients with rare diseases
  • How the involvement of patients can support and accelerate drug development, making much-needed medications available sooner
  • Key features of a collaborative research process
  • How to understand and address the patients' needs
  • Value of patients' engagement in the research process throughout the drug development lifecycle
  • Q&A with our experts
Language: English
Who can attend? Anyone with the event link can attend
Featured Presenters
Webinar hosting presenter Inês Alves
Patient Organization Representative Advisory Board, Rare Diseases
Inês Alves is a patient expert in rare bone diseases. She is the creator of Beyond Achondroplasia as well as the founder and president of ANDO Portugal, the Skeletal Dysplasia National Association. Being a EUPATI fellow and EUPATI Fundamentals trainer, Ines serves as Vice-president of EUPATI Portugal and Patient representative at ERN BOND (European Reference Network for Rare Bone disorders). As a mother of 3 children, one of which has achondroplasia, a rare bone condition, she is involved in a number of EU initiatives aimed at improving research, diagnostics, and treatment for rare disorders.
Webinar hosting presenter
Head of Rare Disease and Real-World Evidence Departments
Dr. Alex Artyomenko, MD Ph.D. currently serves as the Head of Rare Disease and Real-World Evidence departments for Ergomed. Initially trained as a cardiologist, Alex has nearly 20 years of clinical research experience, developing and implementing study designs and operational strategies for rare disease clinical trials in various phases and indications. Alex is passionate about the patients’ engagement in the research process and leads the company’s focus on accelerating the delivery of new therapies for rare disease patients.
Webinar hosting presenter
Patient Engagement Officer, Ergomed
Bojana Mirosavljevic’s role is to ensure that the patient’s perspective is always considered and present during a clinical trial. Educated as a chemist and embryologist, in 2010 Bojana founded and is still president of an association for children with rare diseases in Serbia. In 2013, Bojana lost her daughter Zoya to a severe and rare form of Batten disease, and today, Serbia has Zoya’s law for the prevention and diagnosis of rare diseases, which has saved more than 3,000 lives.
Webinar hosting presenter
About Ergomed, plc
Founded in 1997, Ergomed plc is a global, full-service CRO with a strong heritage in Europe and the United States of America dedicated to providing specialized services to the pharmaceutical industry and developing new drugs. Ergomed plc has provided and managed clinical development, trial management, pharmacovigilance, and medical information services for over 300 clients: these range from top 10 pharmaceutical and generics organizations to small and mid-sized drug development companies. Ergomed Clinical Research is a complete, global Phase I-IV clinical development and trial management service partner with leading experts in the development of drugs in rare diseases and oncology, operating with a global footprint in over 100 countries, enabling our clients to access solutions even for their toughest clinical development and trial management challenges from the early phase to complex late-stage programs.
Contact Us: www.ergomedplc.com
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