Attention for Pompe Disease in Russian newspaper

Maryze and Alexander Kosenko
Category: Archive
May 17, 2014

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.

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