The Nordic primary immunodeficiencies (PIDs) patient groups from Finland, Norway, Sweden, Denmark, Iceland and Estonia got together in Helsinki, Finland, in May 19-20, to exchange views, learn from each other and forge future collaboration plans. Close to 40 participants attended and benefited from the two-day information packed sessions. IPOPI Chairperson, Jose Drabwell, was also in attendance.

On the first day, Prof Ann Gardulf (immunology nurse) and Prof Rolf Gustafson (adult immunologist) gave participants very important information for both health care professionals and patients. They provided an in-depth history of immunoglobulin and explained some of the issues associated with Subcutaneous Immunoglobulin (SCIG) such as using the right size needle, ensuring the tape is applied properly, etc. Ms Minna Muranen, a nurse, dietician, pharmacist, and motivational coach focused on nutrition, low absorption and imbalance of gut bacteria.

The second day of the meeting gave the attending IPOPI National Member Organisations (NMOs) an opportunity to talk about the PID environment in their countries and their recent achievements.  (See dedicated box)
Small workshops followed discussing various topics such as “How to improve co-operation between Nordic countries”, “Problems and challenges of living with PID”, “How to explain PIDs in case of a medical emergency”.
In the afternoon session, Dr Merja Helminen (paediatric infectious disease specialist) spoke about the manifestation of PID in children. Given their rarity, the traditional warning signs do not apply in the case of children, Dr Helminen suggested using Dr Beatriz Carvalho’s ‘Attending to Warning Signs of Primary Immunodeficiency Diseases Across the Range of Clinical Practice’ paper.
Dr Emma Haapaniemi from Karolinska Institute spoke about new and emerging PID treatments such as gene therapy and the importance of identifying the faulty genes as a way to guide future therapy options.
Dr Lotte Denning closed the day with a talk on patients’ mental health. Depression, sadness, less interest, less energy, more tired, sleeping problems, changes in appetite, less able to concentrate are all manifestations of those living with a primary immunodeficiency. This presentation highlighted the lack of psychological support for patients with a PID and gave an overview of available services in the Nordic countries.