Welcome to the International Pompe Association (IPA)
For Immediate Release: April 9, 2014
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The IPA is excited to announce that the international Pompe community has chosen April 15, 2014 as the first annual International Pompe Day. The goal is to foster international awareness of Pompe Disease under the slogan "Together We Are Strong." As a united community of patients, family, friends, physicians, scientists, and industry we have an undeniable strength. It is as a united community (the Pompe Model) that we have made great strides in learning more about Pompe Disease and in working towards treatments and disease management. It is as a united community that we support each other when the daily struggles of living with Pompe become too much. Nothing that has been accomplished would have been possible without everyone working together. Together We Are Strong!
The International Pompe Association (IPA) is organizing a variety of awareness activities including an online Photo Gallery! Many other events are being planned around the world to mobilize the community and increase awareness. For more information please visit the IPA website www.worldpompe.org to see how YOU can participate!
Soccer Team RCD Espanyol supports International Pompe Day
At April 15 it is International Pompe Day and to celebrate this the Asociación Española de Enfermos de Glucogenosis AEEG is organising an event that will take place on Sunday April the 13th. The RCD Espanyol soccer team in Barcelona supports AEEG to make this day a great day. There will be a free entry for the match between RCD Espanyol versus Rayo Vallecano. AEEG invites you to register to be able to watch the match live! During the day there will be other surprises too.
Asociación Colombiana de Pacientes con Enfermedades de Depósito Liposomal (ACOPEL) decided to organise a special event to gather and honour Pompe patients and their families on April the 5th. This year April 15, the official date for International Pompe Day, is in the Holy week (the week before Easter), a very important week in Colombia. This is why the decission was made to have the celebration earlier.
In Colombia 22 Pompe patients are known. At the patient meeting in Cartagena the emphasis will be on the need for comprehensive care, involving both the patient and the caregiver. At this meeting a physician, physical therapist, an occupational therapist, a dietician and a psychologist will present on the topics involved.
Following the slogan of International Pompe Day 'Together we are strong', ACOPEL focusses on the importance of the caregiver to the Pompe patient. Caregivers (often parents, partners and other family members) offer an important part of their life to improve the quality of life of Pompe patients. In many situations it is thanks to caregivers that Pompe patients can have a life. Therefore the final ceremony is a tribute to the caregivers from the patients. Previous to this ceremony caregivers will have a 'wellness' afternoon where they will have the opportunity to get a 'make over' with make up and a hair session, followed by a photo shoot. With this event ACOPEL wants to send out the message that Pompe disease requires comprehensive care and that caregivers play an essential role. It is important that public institutions learn that comprehensive care is important and much needed by patients and their families.