Lasīt šo lapu latviešu valodā (Read this page in Latvian)
Latvia has developed its national Rare Disease Plan 2023-2025 in alignment with EU recommendations to improve the diagnosis, treatment, and care of patients with rare diseases. The first Latvian Rare Disease Plan was developed and adopted in 2013. It was created in response to the EU Council Recommendation on an action in the field of rare diseases(2009/C 151/02), which encouraged EU Member States to establish national strategies for rare diseases. Since then, Latvia has updated its rare disease policies to align with evolving EU regulations and medical advancements. In 2025, Latvia is working on its fourth national plan for rare diseases.
Key highlights of the Latvian Rare Disease Plan
The main objectives of the plan include:
- Early Diagnosis & Screening: Strengthening neonatal screening programmes and improving diagnostic pathways.
- Access to Expert Care: Development of national reference centres and integration inEuropean Reference Networks (ERNs).
- Personalised Treatment & Access to Medicines: Ensuring access to orphan drugs and advanced therapies.
- Patient Support & Coordination: Establishment of rare disease coordinators and patient registries.
- Data & Research Infrastructure: Development of a national registry and participation in international research projects.
The plan also focuses on cross-border collaboration and the integration of precision medicine in rare disease management.
Expert advice
The Coordination of Rare Disease treatment and care in Latvia:
The Rare Disease Coordination Centre at the Children’s Clinical University Hospital (BKUS) oversees rare disease treatment and care in Latvia, with support units at Pauls Stradiņš Clinical University Hospital (PSKUS) and Riga East Clinical University Hospital (RAKUS). These centres provide the following services:
- Treatment and care coordination: Helping a patient find the most knowledgeable specialists for their diagnosis, organising consultations and multidisciplinary team meetings, and ensuring proper treatment.
- Consultations with paediatricians and internists: These specialists assess the patient’s overall health and provide treatment recommendations within their area of expertise.
- Psychologist consultations: Free psychological support is available for individuals with rare diseases and their parents.
- Nutritionist consultations: Guidance on special diets and nutrition tailored to the patient’s condition.
Contact information:
Children’s Clinical University Hospital (BKUS)
Rīga, Vienības gatve 45 (Monday–Friday, 8:00–16:00)
Registration: +371 67514618
Coordinator: Inese Lediņa: +371 25680056
Email: retasslimibas@bkus.lv
Latvian expert centres are gradually integrating into European Reference Networks (ERNs) to ensure cross-border collaboration and access to specialised expertise.
National registry
Patients are included in the national Rare Disease Registry and receive an ID card confirming their rights to services for people with rare diseases.
Rare Disease ID Card
The Rare Disease Coordination Centre at the Children’s Clinical University Hospital (BKUS) issues the Rare Disease ID Card.
A detailed description with an example is available here.
For certain diagnoses, such as cystic fibrosis or pulmonary hypertension, ID cards are prepared centrally and issued during a specialist consultation.
Scientific research –
Participation in ERDERA
Latvia is a participant in the European Rare Diseases Research Alliance (ERDERA), a Horizon Europe project running from September 2024 to August 2031. The Children’s Clinical University Hospital (BKUS) and Rīga Stradiņš University (RSU) are among the Latvian institutions involved. ERDERA aims to improve the diagnosis and treatment of rare diseases by fostering collaboration among European healthcare professionals and institutions. The project focuses on developing innovative solutions to enhance patient care and access to specialised services.
National Research Initiatives
While Latvia does not currently have a dedicated national programme specifically for rare disease research, significant strides have been made. A notable example is the inclusion of spinal muscular atrophy (SMA) screening in the national newborn screening programme. This development was driven by a pilot study conducted by RSU researchers, in collaboration with the Children’s Clinical University Hospital, which screened approximately 26,000 newborns. The early diagnosis and treatment resulting from this initiative have already saved the lives of three newborns.
Additionally, the Latvian Association of Rare Disease Specialists (RSSA), in collaboration with RSU and Pauls Stradiņš Clinical University Hospital, organises the annual Latvian Conference on Rare Diseases. The 18th edition, held in April 2025, aimed to raise awareness among medical professionals and students about rare diseases, their diagnosis and treatment options in Latvia.
These efforts reflect Latvia’s commitment to advancing rare disease research and improving patient outcomes through both international collaboration and national initiatives.
The role of Latvian Alliance of Rare Diseases
The Latvian Alliance of Rare Diseases advocates for the rights and needs of rare disease patients by influencing policy, improving healthcare access, and supporting patient organisations. It collaborates with national and international partners to enhance diagnosis, treatment, and research, and integrating Latvian rare disease centres into European Reference Networks. The Alliance promotes public awareness, organises educational events, and works with healthcare institutions to develop specialised services, including the Rare Disease Registry and Centres of Expertise. It strives to improve patient care, access to innovative treatments and legislative frameworks.
Relevant resources
National contact
Latvian Alliance of Rare Diseases
https://retasslimibas.lv
alianse@retasslimibas.lv