Welcome to the International Pompe Association (IPA)
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!
Attention for Pompe Disease in Russian Newspaper on International Pompe Day
On International Pompe Day the Russian Pompe Association was able to get an article on Pompe Disease in one of the Russian newspapers. In the article information on Pompe disease has been provided and the issues involved.
In Russia several patients are diagnosed, but up till now for most families this is a rollercoaster of uncertainty and hope. The Union of Patients and Patient Organisations for Rare Diseases explained in the article: "Vasen'ka was one of the first patients in Russia diagnosed with Pompe disease. To prevent him to get infections the Charitable Fund 'Family for Every Child' helped to get an isolated ward for him. It was essential to protect him from hospital infections".
Currentlly 8 patients are receiving enzyme replacement therapy via a charitable program from the manufacturer Genzyme. Unfortunately there is still a low awareness among physicians about Pompe disease. According to the patient organisation "the Russian Federation has not yet claimed responsibility for the full amount of medical specialist care and treatment for this small group of patients. Lack of timely diagnosis leads to a delayed treatment and results to severe disability and death."
In order to improve awareness on Pompe disease among physicians and patients the patient organisation launched a website in April. On this website detailed information can be read about Pompe disease, care and treatment.
The Union of Patients and Families with Glycogen Storage Diseases and the Union of Patients and Patient Organisations for Rare Diseases have sent an appeal to the Ministry of Health of Russia about the need for urgent action to improve diagnosis and to provide care and treatment for people with Pompe disease. On Twitter one could read that at the annual event where Russian citizens can ask questions to the President of the Russian Federation Mr. Putin patients did ask him about his policy for rare diseases.
Hero Award for YeeSeng Lee, father of two Pompe girls and President of Malaysian LSD Association
Ir. YeeSeng Lee lives in Malaysia and is father of two lovely Pompe girls named Yen Ling and Wei Ling and one son who is unaffected. He works with the Malaysia Electricity Board 'Tenaga Nasional Berhad', but at the same time he is also the President of Malaysia Lysosomal Disease Association. It is an association set up for the benefit of all Lysosomal Storage Disease patients.
On 17th April 2014, he was given the 'My Hero' award by the Kuala Lumpur and Selangor Chinese Chamber of Commerce and Industry (KLSCCCI). He was chosen as he fights for the whole nation. Ir. YeeSeng Lee says: "It was a great honor for me to receive the "My Hero" award. Getting this award means so much to me, it is recognition of my hard work that came at the time I most needed it. I felt frustrated at times. After years of trying to get our Ministry of Health to review their existing Enzyme Replacement Therapy funding allocation, nothing had changed. Our government still refused to increase the old budget. Currently the doctors are treating 15 LSD patients with this limited budget.