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Free Educational Webinar – “Early Involvement of Patients in Pharmaceutical Research and Development for Rare Diseases”

We are pleased to announce that the registration to our free rare disease-focused educational webinar is now open.

This webinar will run in 2 sessions:

  • Session 1: 16 March 2021, 10am EDT / 2pm GMT / 3pm CET
  • Session 2: 16 March 2021, 2pm EDT / 6pm GMT / 7pm CET

To register for one of the sessions click directly:  HERE


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.
    1. Key features of a collaborative research process
    2. How to understand and address the patients’ needs
    3. Value of patients’ engagement in the research process throughout the drug development lifecycle
*This webinar will be followed by a Q&A with our experts. 
Inês Alves, DMV
Patient Organization Representative Advisory Board, Rare Diseases, Ergomed

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.

Dr. Alex Artyomenko
Head of Rare Disease and Real-World Evidence Departments, Ergomed

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.
Bojana Mirosavljevic
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.

Ergomed has a strong heritage in assisting biotech and pharma companies with orphan drug development offering a full range of high-quality clinical research and trial management services and we are proud to share our expertise.

Please send your enquiries to: info@ergomedgroup.com

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