Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: The study was planned in a PedNet meeting where travel costs were reimbursed reports travel was provided by PedNet Haemophilia Research Foundation. Susanna Ranta reports a relationship with Novo Nordisk that includes: consulting or advisory. Susanna Ranta reports a relationship with Roche that includes: board membership and consulting or advisory. Susanna Ranta reports a relationship with Swedish Orphan Biovitrum AB that includes: consulting or advisory. Susanna Ranta reports a relationship with Boehringer Ingelheim Ltd. that includes: consulting or advisory. Susanna Ranta reports a relationship with Swedish Childhood Cancer Foundation that includes: funding grants. Susanna Ranta reports a relationship with Ellen Bachrach Memorial Fund that includes: funding grants. Susanna Ranta reports a relationship with Stockholm County Council that includes: funding grants. Ester Zapotocka reports a relationship with CSL Behring, Novo Nordisk, Takeda, Roche, Sobi that includes: board membership and speaking and lecture fees. Nadine G Andersson reports a relationship with CSL Behring, Octapharma, Sobi Sanofi that includes: board membership and speaking and lecture fees. Nadine G Andersson reports a relationship with Novo Nordisk Inc., Sanofi that includes: funding grants. Kathelijn Fischer reports a relationship with Bayer, Biogen, CSL Behring, NovoNordisk, and SOBI that includes: consulting or advisory. Kathelijn Fischer reports a relationship with Bayer, NovoNordisk, Pfizer that includes: funding grants. Kathelijn Fischer reports a relationship with Bayer, NovoNordisk, Pfizer that includes: speaking and lecture fees. Kathelijn Fischer reports a relationship with Sobi, Bayer that includes: travel reimbursement. Gili Kenet reports a relationship with BSF, NovoNordisk, Pfizer, Roche, Tel Aviv University that includes: funding grants. Gili Kenet reports a relationship with ASC therapeutics, Bayer, Novonordisk, Pfizer, Roche, Sanofi- Genzyme, Takeda that includes: consulting or advisory. Gili Kenet reports a relationship with Bayer, BioMarin, CSL, Pfizer, Sanofi- Genzyme, Sobi, Spark, Takeda, Uniquore that includes: board membership and speaking and lecture fees. Christoph Konigs reports a relationship with BFSH, Bayer, CSL Behring, Florio, MSD, Novo Nordisk that includes: consulting or advisory and speaking and lecture fees. Christoph Konigs reports a relationship with RocheChugai, SobiSanofi, Takeda that includes: consulting or advisory and speaking and lecture fees. Veerle Labarque reports a relationship with Bayer, NovoNordisk, Octapharma, Roche, Takeda that includes: consulting or advisory and speaking and lecture fees. Veerle Labarque reports a relationship with CLS Behring, Abacus that includes: funding grants. Christoph Male reports a relationship with Bayer, Biotest, CSL Behring, Novo Nordisk, Swedish Orphan Biovitrum, Takeda that includes: consulting or advisory. Christoph Male reports a relationship with Bayer, Biomarin, Biotest, Bioproducts Laboratory, CSL Behring, LFB, Novo Nordisk, Pfizer, Roche, Swedish Orphan Biovitrum Takeda that includes: consulting or advisory. Christoph Male reports a relationship with Biotest, CSL Behring, Novo Nordisk, Swedish Orphan Biovitrum that includes: travel reimbursement. Martin Olivieri reports a relationship with Bayer, Biomarin, Takeda, CSL Behring, Octapharma, Pfizer, Shire, Roche, Stago and Swedish Orphan Biovitrum that includes: funding grants. Martin Olivieri reports a relationship with Bayer, Biomarin, NovoNordisk, Takeda, CLS Behring, Pfizer, Roche and Swedish Orphan Biovitrum that includes: consulting or advisory and speaking and lecture fees. Jayashree Motwani reports a relationship with Roche, CSL Behring, Bayer, SOBI that includes: funding grants and speaking and lecture fees. Marloes de Kovel reports a relationship with PedNet Haemophilia Research Foundation that includes: employment. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.