Over the last few years the IPA has communicated to national patient organisations through private emails and newsletters and to families and patients through GSDNet and our website; you should all be familiar with the Pompe Connections and Pompe Testimonials found there.
But we are aware that these methods have not provided the most effective way of achieving our objectives and so we are currently implementing a number of changes to the website to keep it updated with news and national events, and to collect valuable feedback from the Pompe community.
As part of this process we have recruited a part-time IPA Communications Coordinator. You may know her better as Maryze (Maryze Schoneveld van der Linde).
The role of the IPA Communication Coordinator will be to collect and filter items submit to the IPA for posting to the website; these will include:
- Program Updates from Industry
- Patient Organisation Events for posting on Events Calendar Page
- Patient Stories
- National and International Pompe News
We are currently creating new avenues through which individuals, Patient Groups, or professionals can submit news items to the IPA for posting to the website. You will see that we now have a new web-based “help desk” that you can access from the “Contacts and HelpDesk” menu item on each page. Alternatively, if you prefer, you may continue to email Maryze directly at communications@worldpompe.org or maryze@xs4all.nl.
If you would like to post in a language other than English it would be helpful if you could accompany your piece with an English translation, otherwise it may take some time before we are able to submit it to the site.
So please welcome Maryze into her new role and help her by sending her your stories, news and events so that we can maintain a fresh and useful service to all our international visitors.
All the Best
Allan
(Allan Muir – Chairman, International Pompe Association)