Latvia currently registers 15 thousand rare disease patients, and six thousand patients are children. According to statistics, 65 to 111 thousand people in Latvia could experience rare diseases at some point in their life, said Marta Augucēviča, expert of the Alliance of Rare Diseases of Latvia, in the LTV morning newscast on Tuesday.
In Europe, the total number of people with rare diseases reaches 30 million, while in the world – 300 million.
Madara Auzenbaha, chief doctor of the rare diseases program at the children's hospital, pointed out that timely and accurate diagnosis in Latvia achieves opportunities at the European level, but there are still queues to contend with, because for a very long time, there were no opportunities at this level.
She admitted there was probably no medical sector where it could be said there was enough funding. “Rare diseases are somewhat of a priority because they have a plan for rare diseases and state aid, yet support is still lacking,” Auzenbaha noted.
The expert of the Latvian Alliance of Rare Diseases pointed out that the campaign slogan “Color your strength” is the story that we each have our strengths by showing this, we can improve our lives and those of our loved ones.
The campaign is organized by the Latvian Rare Diseases Alliance, during which information activities on social networks and media will take place, informative posters will be placed in pharmacies and hospitals of Latvia, and a traveling photo exhibition of the Rare Diseases Alliance will arrive in libraries in different municipalities. This exhibition will also be opened at the National Library of Latvia on February 13.
On February 29, Rīga Stradiņš University will host a forum on rare diseases.
According to the data of the Disease Prevention and Control Center, in December 2023, 14,882 residents with 1,511 different diagnoses of rare diseases were included in the Latvian Register of Rare Diseases, including 8,320 women and 6,561 men. 55% of the total number of registered persons live in Rīga and Pierīga, 12% – in Zemgale, 10% – in Kurzeme, 9% in Vidzeme and Latgale each, and 6% of the cases do not indicate their place of residence.
