Polish patient organisations plant the first tree in Pompe Garden!

During International Pompe Day the Polish Association of Pompe Patients in partnership with Genzyme launched the social campaign 'Pompe Garden'. This aims to increase knowledge about Pompe disease. Currently about 30 patients are diagnosed in Poland. The ceremony of tree planting took place at the new Peadiatric Hospital of the Medical University of Warsaw.

The Pompe Garden will be a place where rare plants will be planted and to allow people to 'meet' and 'see' the rare plants as symbol of the rare Pompe disease. It will be a place where patients will meet and celebrate International Pompe Day every year. The action was supported by the Medical University of Warsaw, the National Forum for Rare Diseases and the Parliamentary Assembly for Rare Diseases.

The celebration of the first International Pompe Day began with an educational meeting at the Medical University of Warsaw, where Pompe patients had a chance to share their stories with gathered guests and media. The symbolic tree was planted by Maciej Ptasinki (President of the Association of the Association of Patients with Pompe disease), Miroslaw Zielinski (President of the National Forum for Rare Diseases), Barbara Czaplicka (Polish politician) and Marek Kulus (Vice Rector of the Medical University of Warsaw). Before the tree planting specially trained volunteers educated the citizens of Warsaw about Pompe disease.

The Polish patient groups belief that this initiative will help to break the silence around rare diseases and will positively influence the attitude and awareness of society towards these diseases. Thanks to activities like this people can directly experience the contact with rare disease patients and integrate with them. Everything to experience that Together We Are Strong!

 

 

planting a tree in the pompe garden

Maciej Ptasinski, President of the Association of Patients with Pompe disease plants the first tree in the Pompe Garden in Warsaw.

 

poland educating the public

 Volunteers educate the citizens of Warsaw on Pompe disease.

 

poland group photo

A group photo at the first tree planted in the Pompe Garden.