The development of a new plan is underway to tackle the challenges posed by rare diseases. These conditions, though unique in their impact on individual patients, collectively affect a considerable portion of the population. Many individuals and their families encounter a protracted journey toward accurate diagnosis, coupled with intricate treatments and a deficiency in accessible information and unified support networks.
The National Plan is being meticulously crafted by the Rare Diseases Health Policy Group. This initiative received approval from SAM, and is being implemented in collaboration with key institutions including the Vilnius University Hospital, the Kaunas Clinical Hospital, the University of Health Sciences of Lithuania, the Ministry of Health, and the Lithuanian Science Council. Crucially, patient organizations are also integral to the process.
This cross-sectoral approach aims to integrate clinical expertise, ongoing scientific investigation, and strategic health policy considerations. According to Deputy Minister of Health Laimutė Vaidelienė, in 2012, approximately 20,000 individuals in Lithuania were living with rare diseases. The comprehensive plan seeks to systematically resolve these issues and improve outcomes for those impacted by these conditions.
Topics: #plan #rare #diseases
Disappointing, it’s frustrating that progress is still so slow.