Welcome to the International Pompe Association (IPA)
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 >
Press Release: For Immediate Release
December 16, 2014
As many of you are probably aware, on December 13, 2014 an interview was published in Argos (a Dutch radio program) regarding a potential new production method for a treatment for Pompe disease. A short summary of the interview was made available in English on the website: www.utrechtcentral.com.
The International Pompe Association (IPA) strongly supports any research into Pompe disease that will increase disease knowledge, improve current treatments (through better efficacy or better price), or lead to better disease management. We also strongly believe in providing the Pompe community with clear, unbiased information regarding developments in the field of Pompe research.
After the publication in Argos, the IPA and our member organizations have received numerous inquiries regarding the announcement in the article that “a new, more economical method” for producing enzyme replacement therapy for Pompe disease could be possible within the next two years.
The IPA fully supports any efforts that will lead to more cost-effective treatments, as well as more effective treatments in general. However, at this time it is also important to understand the context in which the statements in the article were made.
On the 17th - 19th October the Australian Pompe's Association held its first National patient and family support forum in Melbourne.The objective was to bring everyone together and provide advice on diet and exercise and provide some advice on living with Pompe disease.
With Australia being so vast, similar size to Europe, but with only 33 patients the task of bringing members together was going to be a challenge. Members are living in every state and territory and some members had flights of over 4 hours to join the meeting. Three of our New Zealand colleagues also made the journey across the Tasman to be at the meeting. The forum was important as many of the members being so isolated had never met another Pompe patient or one who is not related to them. The opportunity to learn from one another and to just see how others have conquested the challenge of getting up or negotiating a few steeps was so important.