Source: clkerUpdate: January 29, 2015

The International Pompe Association (IPA) would like to thank everyone for their interest in the Pilot Phase of our Pompe (Em)Power Program.

After careful consideration and discussion, and in the interest of ensuring a successful program the IPA Board has decided to open applications to those who are between the ages of eighteen to thirty-five (18-35).

In order to ensure that those interested who may not have been previously eligible because of age will have adequate time to apply, the application deadline has also been extended. The new application deadline is Friday, February 20, 2015.

If you have any questions, please contact Maryze Schoneveld van der Linde at maryze@worldpompe.org

Thank you.
The IPA Board

 

December 21, 2014

In Genzyme’s 4th annual PAL Awards program, the IPA received an Award for the submitted Pompe (Em)Power Pilot Project.

The Pompe (Em)Power Program is designed as a mentoring/young adult program intended to empower individuals that are interested in becoming involved in international patient advocacy. At this time the IPA is accepting applications to participate in the Pilot Phase of the Program.

The inaugural event of the Pilot Phase will be a face-to-face meeting in the Netherlands where attendees will spend four (4) nights and three (3) days getting to know each other and learning skills that will assist them on the path to becoming international patient advocates. Ria Broekgaarden and I (both founding members of the IPA) will organise and facilitate the meeting. We are both skilled trainers and have a lot of experience in Pompe disease and all of the issues involved in international patient advocacy.

The meeting is scheduled for June 8th-12th, 2015 in De Rijp, the Netherlands (40km from Amsterdam). June 8th and 12th will be travel days, with the meeting being conducted from June 9th-11th.

Participants will be encouraged to engage in discussion topics presented to them and helped to share their own thoughts, questions, and ideas. The IPA believes that open discussion and debate are important to working towards the best interest of the Pompe Community, and this message will be stressed throughout the Program. Participants will also be encouraged to identify their personal strengths and weaknesses, as well as those of the whole group, so that by working together, a stronger group is formed. As the slogan for International Pompe Day states: Together We Are Strong. This message will be emphasized to participants and an educational team-building activity will be arranged to allow participants get to know each other better, and to reinforce discussion topics related to networking and the importance of working together.

After the initial face-to-face meeting in the Netherlands, attendees will continue to communicate and work together through a variety of mediums (i.e. Skype, email, etc.). Participants will also be encouraged to organize activities in their own countries for other young adults. The groundwork for this will be laid during the face-to-face meeting by discussing the “Train the Trainer” principle. This Pilot Program will be the first step in encouraging and guiding young adults interested in international patient advocacy.

Important note: only European countries and Russia, Turkey, Israel, North Africa and South Africa are eligible.

More information and downloads:

Contact: Maryze Schoneveld van der Linde, Email maryze@worldpompe.org