International Pompe Association

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On October 3, 2013, the Dutch Minister of Health, Ms. Edith Schippers, announced that Myozyme will continue to be reimbursed for all Dutch Pompe Patients.

Myozyme (also known as Lumizyme in the United States) is manufactured by Genzyme Corporation, and is currently the only commercially approved treatment available for Pompe Disease.

The International Pompe Association (IPA) congratulates our Dutchfriends on this news. It was the result of many months of hard work and cooperation between all interested parties. The IPA would like to thank all involved in the decision-making process for working together during this time.

The research done by the Pompe Centre in the Netherlands through Prof. Dr Ans van der Ploeg and her team was instrumental in the supporting continued reimbursement for all Pompe Patients in the Netherlands, and the IPA knows that it will be of enormous value to other countries and patients as well.

The IPA would also like to recognize the hard work of the the Dutch Patient organization, Spierziekten Nederland, and the many patients who went public and told their individual stories when called upon. We believe that the Patient Voice was a necessary and important part of the reimbursement discussion.

We would like to thank Genzyme Corporation; without industry interest and investment in drugs for rare diseases, with all of the risks that it entails, treatments like Myozyme would not be possible.

And, finally, we would like to thank the Dutch government and Ministry of Health for their decision.

All stakeholders have been instrumental during this Pompe Journey - once again illustrating the importance and vitality of the Pompe Model. We hope that therapeutic solutions will be found for a lot of other rare diseases in the near future. In the meantime, our Pompe Journey will continue as research and technology are developing and will bring new insights and improvements to existing therapies.

The IPA Board