News and Events

Of all the rare diseases in the world only 5% have a treatment – meaning 95% do not!

A lack of awareness amongst patients and their families

• According to the U.S. National Institutes of Health (NIH), 85% of patients are unaware of clinical trials as an option at the time of their diagnosis.
• Patients and families dealing with rare diseases will often hear about clinical trials, without understanding what the process entails.
• A lack of awareness and understanding is recognized as being one of the greatest barriers to clinical trial participation by patients.

Purpose of this series of two webinars:

• Our experts want to dispel the mystery and confusion about clinical trials from the patients’ perspective.
• Our goal is to help educate patients and their families who are dealing with rare disease, providing useful information about what is involved in clinical research.

What you will learn:

• In this series of two webinars our experts will explain the development process of new drugs and what it means to participate in a clinical trial.

TO REGISTER for Webinar 1 on 15 September:

Session timezones:  10am EDT / 3pm BST / 4pm CEST
Click here

OUR SPEAKERS:

• Christa Van Kan, Strategic Director Rare Diseases at PSR Orphan Experts/Ergomed. PSR/Ergomed is one of the leading experts in assisting biotech and pharmaceutical companies with drug development for rare diseases. Ergomed Group offers a full range of high-quality clinical research and trial management services.
• Dr. Rick Thompson, CEO of Findacure. Findacure is a UK charity that is building the rare disease community in order to drive research and help develop treatments. Findacure aims to transform the world’s understanding of rare diseases and the devastating impact they have on people’s lives.

Please note: WEBINAR 2 in this series will be held on 20 October:
“The Patient Experience: What is it Like Participating in a Clinical Trial?”
To register for this webinar – please click here