The National Association of Hemophiliacs in Romania (ANHR) is organizing an event open to the public in Cișmigiu Park in Bucharest on Saturday, April 18, on the occasion of World Hemophilia Day. “Community Day in Open Space” will take place between 12:00 and 16:00, in the Foișor area, and access is free.
Treatments exist, diagnosis is the problem
It is the first outdoor edition of an event that traditionally brought together the patient community indoors. A symbolic choice, which aims to take the message of diagnosis where people are
“The initiative is part of the campaign <
On April 18, ANHR goes to Cișmigiu Park, so that access to a correct diagnosis is no longer a privilege of those who know where to look.
What is happening on April 18 in Cișmigiu
The event “Community Day in Open Space” is open to all and does not require prior registration. Visitors will be able to talk directly with volunteers and community members about the symptoms of hemophilia and other rare blood clotting disorders, the diagnostic process and the treatment options available in Romania.
The event has a dual purpose: strengthening the patient community and informing the general public. “A timely diagnosis doesn’t just change the trajectory of the disease — it changes a whole life”the organizers say.
A central element of the day will be an interactive art installation: a mosaic built together with park visitors. Each person present will be invited to add a piece, contributing to the realization of the ANHR symbol. Thus, the installation will transform a day of medical information into a visible gesture of solidarity.
“My parents sought a second opinion. That changed my life.”
Valentin Brabete, president of ANHR, speaks from his own experience about the importance of a correct diagnosis:
“I was diagnosed at the age of 3, after a severe hemarthrosis in the knee, initially mistaken for an infection that was to be operated on. My parents sought a second opinion and that changed my life. It was shocking for me to learn, 30 years later, that in Romania there are still families going through the same experience, with wrong or delayed diagnoses.”
The President of ANHR also says that our country has made progress in recent years in terms of treatment, but emphasizes that access to therapy cannot exist without diagnosis:
“Years of effort and collaboration between patient associations, doctors and authorities have fundamentally changed the situation of those with rare coagulation disorders in Romania. We managed to reduce the difference between Romanian patients and those from other European Union countries. But without diagnosis, people can’t benefit from this progress.”
The disease that influenced history. And which today we can detect through a blood test
Hemophilia is not a new disease. It has been known for over two millennia, but the road to its correct diagnosis was long and left deep traces including in the history of the world. Queen Victoria of Great Britain, one of the most influential figures of the 19th century, was the carrier of a genetic mutation that she knew nothing about. He passed it on to his children and grandchildren, who carried it on to the royal families of Russia, Spain and Germany.
“The hemophilia of Tsarevich Alexei, son of Tsar Nicholas II, brought his mother into Rasputin’s arms and contributed to the destabilization and eventual collapse of the Romanov dynasty. (…) The exact diagnosis of the disease in the Romanov family was confirmed only in 2009, through DNA analysis — almost a century after the events it influenced “say ANHR representatives.
Today, medicine offers advanced solutions, including therapies that act at the gene level, and the life expectancy of patients with severe hemophilia has increased significantly compared to previous generations. And yet, the first step remains the same as always: diagnosis.
