Open call for Duchenne Advocates

Over the past years, the Duchenne world has been changing due to a fast evolving research and regulatory landscape. For this, the need for adaptive and proactive Duchenne advocates has increased. 

The Duchenne Data Foundation, with the support of the World Duchenne Organization, is launching the 3rd edition of the Duchenne Patient Academy. In this intensive two-day training session, both Next Generation Young Advocates and Experienced Advocates will receive a parallel training and updates to set a strong base for current and future global advocacy.

This Duchenne Masterclass will focus on setting the foundation of advocacy and gaining a deeper understanding of the Duchenne field in terms of regulatory, HTA, clinical trial, care, research and industry developments. 

Location
Athens, Greece.

Agenda
Click here to see the draft programme. Please note this is still under development.

Open call
Patient organizations who are a member of the World Duchenne Organization are eligible to send two members to the Duchenne Patient Academy. For other patient organisations and advocates, Duchenne Data Foundation opened a call to provide scholarships for 10 Next Generation Advocates and 10 Advanced Advocates. For confirmed participants, flight and accommodation are reimbursed. 

Profile
We are looking for two types of international Duchenne advocates:

  1. Next Generation Young Advocates who are just starting and can use guidance in explanation and implementation of basic Duchenne advocacy principles, and
  2. Advanced Experienced Advocates who are willing to share and build upon best practices to redefine the global strategy on DMD advocacy.

We are looking for advocates who want to make a difference and are able and willing to learn, teamwork, and keep engaged before, during and after Duchenne Patient Academy to produce concrete results for the benefit of the Duchenne community. 

The number of participants is limited to 20 advocates to ensure effective exchange. A sufficient knowledge of English and a strong commitment is essential to participate in the trainings and discussions.

Application procedure

  1. Attendance of this workshop is upon application only. Application for this ended October 28.
  2. The Duchenne Patient Academy committee will select participants based upon their application with motivation on becoming and improving the Duchenne advocacy field.
  3. Further information about travel policy, reimbursement procedures, dietary requirements, and accommodation will be sent upon confirmation of their participation. Do not book travel before your application is confirmed.

We are looking forward to welcoming you in Duchenne Patient Academy 2019!

Organisers
Nicoletta Madia, project manager Duchenne Data Foundation
Suzie-Ann Bakker, communications coordinator World Duchenne Organization