Welcome to the International Pompe Association (IPA)
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.
To raise awareness on Pompe Disease and to get attention from politicians and the Minister of Health in Australia, the Australian Pompe Association (APA) organised a social media event. The APA is a small patient organisation having 30 members. Via Thunderclap 179 messages were send to the Minister of Health on April 15, International Pompe Day. Also a number of members of parliament retweeted the tweets the APA had sent to them on International Pompe Day. In total 480 social media mentions of Pompe Disease were registered.
From all over the world people involved in Pompe Disease supported this initiative of the APA and showed that Together We Are Strong!
Raymond Saich, president APA, raising his voice on rare diseases at the Rare Voices Parliamentary BBQ.