Nordic IPOPI NMOs
Finland currently has 850 diagnosed patients, 450 of which are receiving treatment. Following their recent Annual Meeting a new Board of Directors was elected and a new chair appointed. Finland has a patient guide, a new website and a Facebook page in the pipeline and summer camp to be organised this summer.
Sweden’s PIO is the oldest PID patient group in the world! Founded in 1978, PIO has 1000 members, 515 of which are patients. They recently launched a new website and a successful fundraising campaign. PIO is doing advocacy efforts towards the inclusion of Severe Combined Immunodeficiency (SCID) in the national newborn screening (NBS) programme.
Norway’s NMO has 200 members and its work focuses on awareness, diagnosis, treatment and Quality of Life. There is an ongoing pilot on SCID NBS with 7000 babies already tested and 3 SCID cases found.
Denmark’s patient group is governmentally funded and has 250 members. The group consists of volunteers and all are parents of children with a PID. They organise social events to exchange experiences between parents, siblings and children.
Iceland will soon start NBS for SCID and the Minister of Health is interacting more with patients. They have 200 members, a new website and are raising awareness of PIDs.
Estonia has 12 diagnosed patients, three of whom are on SCIG, two others only on antibiotics while the remaining ones are on IVIG. Members meet regularly to discuss and interact.