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Crown Custodian Margaret says increased awareness of rare diseases might help

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Margareta

Custodian of the Romanian Crown Margareta told a Rare Disease Day event hosted by Elisabeta Palace that by extending her patronage to the National Alliance for Rare Diseases in Romania she wanted to help sufferers of such diseases get treatment.

"I understand very well what is happening in our country and in the world. And I wanted to extend my patronage to your association because we want to increase awareness over rare diseases and maybe we can help with the advancement of everything that means trying to find out why these things are happening," said Margareta.

She pointed out that there are 300 million people worldwide affected. "So we have to do something. And that is why I have got involved. And please feel that we are together and you are not alone," said Margareta.

In her turn, Chair of the National Alliance for Rare Diseases in Romania Dorica Dan said that in Romania there are over one million people affected by such diseases, most of them undiagnosed, adding that she wants to find and treat them.

"What we want to do together is we want to find these patients, to send them to centres of expertise that have been accredited in Romania, because we have managed to have 27 centres for rare diseases currently in operation, which is no small thing. Some of them are related to the European reference networks and so it is good to refer patients to such centres for care and treatment," said Dan.

The event was attended by members of the organisation, patients with a rare disease, medical specialists.

In 2017, Margareta extended her high patronage to the National Alliance for Rare Diseases in Romania.

Over the past years she held evening events at Elisabeta Palace each February 29, the Day of Rare Diseases. In 2019, Princess Maria represented Margareta in Brussels, attending the Annual Gala of the European Organisation for Rare Diseases (EURORDIS).

The National Alliance for Rare Diseases in Romania was established at the initiative of the Prader Willi Association in August 2007, under a project funded by CEE Trust. 32 founding members pooled their efforts to set up the organisation, which laid the foundation for a rare disease organisation and patient groups for which diagnosis is so rare that there was no organisation to protect the sick.

The alliance's mission is to develop and carry out lobbying and advocacy activities to improve the quality of life for patients with rare diseases in Romania.

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