In the field of rare disease most active there are rare cancer patients advocacy and professional organizations in Lithuania.

Lithuanian Patient's Advocacy Group for Rare Cancers www.ROLLD.lt

Childhood Cancer Fund Rugute www.rugute.lt

Society for Oncohematological patients "OHLB Kraujas" www.kraujas.lt

Association for Hereditary Cancer www.PVAS.lt is professional organization.

Currently there is an ongoing academic research project "National hereditary childhood cancer research platform" which focus on six main genetic disease (von Hippel-Lindau syndrome, Li-Fraumeni syndrome, Multiple endocrine neoplasias syndromes (MEN1 and MEN2), Familial adenomatous polyposis and Type 2 Neurofibromatosis) molecular epidemiology and establishing of molecular diagnostic facility as well as information dissemination abour rare disease.