Новини

Is it safe for PH patients to go to work? Adults with PH should try to work remotely whenever possible. You should consider the infection rate in your community, health of household members, financial situation and job type if you decide to go into your workplace.
Flu vaccine for PAH Patients. I have PAH. Do I need the flu vaccine? Yes. All PAH patients should get the flu vaccine.
EURORDIS Winter School. Learn more about rare disease research! Take the free online modules by the link below.
Recent clinical and laboratory studies have shown that cloth masks or face coverings can provide an extra layer of protect to prevent respiratory and aerosol droplets from traveling through the air to other people.
Symptoms of COVID-19 can be difficult to distinguish from your PH and from other viral infections, especially during cold and flu season. You know your symptoms and PH best.

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Clinical study of the effectiveness of Mecitentan and Victoria Burbura
09/01/2015

Clinical study of the effectiveness of Mecitentan and Victoria Burbura.

Christmas is a holiday during which miracles may happen. That's what happened to Victoria, the patient of LCCF of “Sister Dalila”.  She is now included in the clinical trial of macitentan, an effective drug to treat pulmonary hypertension. http://en.wikipedia.org/wiki/Macitentan . The program, however, is a placebo controlled. It means that Victoria will receive medication for a short period of time not knowing whether it is only an active substance or placebo. No doubts, she has a good chance to slow down the  progression of the disease and to improve quality of life. At the same time, Victoria can not stop pre-treatment (iloprost and sildenafil) as the pressure in the pulmonary artery is still very high. Given this, and placebo-controlled design of clinical studies she will continue to need funds for resuming treatment with adequate doses of medications.

 

The fact that Victoria has been included in clinical research is undoubtedly positive. We hope that macitentan will soon be registered in Ukraine and will be available to all patients with PH.

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