Beyond Achondroplasia

Growing together with Clara

EUPATI patient expert course

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EUPATI is a pan-European Innovative Medicines Initiative (IMI) project of 33 organizations, led by the European Patients’ Forum, with partners from patient organizations, universities and not-for-profit organisations, along with a number of European pharmaceutical companies.

The goal is to help patients be more educated and involved in the research and development process of new medicines by offering reliable, objective, comprehensive lay-friendly information and training on the research and development process of medicines.

The EUPATI Expert Training course (2015-2016) offers to 51 European patients and patient advocates an expert-level training in medicines research and development. The course is an independent e-learning coursework and two face-to-face training events over a 14-month period.

Fortunately, this year, I´m a student in the expert training course and I´m representing achondroplasia in the students group. The input of information sharing and growing knowledge has been incredible so far.

One of the reflective questions posed in module 1 was about the benefit of developing expertise in the medicines development process as a patient advocate. And I want to share my answer here because it translates the motifs of starting “Beyond Achondroplasia”.

I have observed that many patients, specially parents of the young children with achondroplasia are willing to understand exactly what are the perspectives of a treatment and how this new medicines come from and how they act in the organism. It is a complicated decision for many parents to accept the idea of having their children in a clinical trial, specially when many parents still see a clinical trial has making their children to be guinea pigs.

Having the opportunity to explain the mechanisms of the new medicines, how they are obtained, the pharmacological development process and specially the basic biology and chemistry, is, I think, a very value step for the best understanding of patients and families about the subject. 

Crossing the barrier of language and technical terms is also a enormous question and challenge. And as patient advocate, one of my main goals is to give valuable information to patients in a comprehensive way. A PhD in astrophysics may not understand basic biology. And when you are a patient and family, the biggest will is to understand what really means all the new science and new drugs development and I want to improve my knowledge  to be able to give this knowledge to all that are interested in it.

 

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