Publications

Peer-reviewed papers:

1. Barman-Aksözen, J., Andreoletti, M., & Blasimme, A. (2023). Current trials in erythropoietic
protoporphyria: are placebo controls ethical?. Orphanet journal of rare diseases18(1), 325.
https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-02941-w

2. Barman-Aksözen, J., Minder, A. E., Granata, F., Pettersson, M., Dechant, C., Aksözen, M. H., & Falchetto,
R. (2023). Quality-Adjusted Life Years in Erythropoietic Protoporphyria and Other Rare Diseases: A Patient-
Initiated EQ-5D Feasibility Study. International journal of environmental research and public health20(7),
5296. https://doi.org/10.3390/ijerph20075296

3. Barman-Aksözen, Granata, Aksözen,  Dechant &  Falchetto (2022) ‘… they had interpreted “disability” as
referring to a patently visible disability’: experience of a patient group with NICE, Disability &
Society, 37:7, 1239-1245. https://www.tandfonline.com/doi/full/10.1080/09687599.2022.2060804

4. Whitty, J. A., de Bekker-Grob, E. W., Cook, N. S., Terris-Prestholt, F., Drummond, M., Falchetto, R., &
Hillege, H. L. (2020). Patient Preferences in the Medical Product Lifecycle. The patient13(1), 7–10.
https://doi.org/10.1007/s40271-019-00400-y

5. Falchetto R. (2020). The Patient Perspective: A Matter of Minutes. The patient13(1), 1–6.
https://doi.org/10.1007/s40271-019-00399-2

6. Barman-Aksözen J. Patient empowerment and access to medicines: Insights from a scientist-patient
suffering from erythropoietic protoporphyria. Medicine Access @ Point of Care. 2019;3.
https://journals.sagepub.com/doi/10.1177/2399202619865167

 

Correspondence and letters:

1. Granata, F., Dechant, C., & Falchetto, R. (2023). Dersimelagon in Erythropoietic Protoporphyrias. The
New England journal of medicine388(26), 2491–2492. https://doi.org/10.1056/NEJMc2305601

2. Barman-Aksözen J. (2022). Are payors ready for transparent prices yet?. The Lancet regional health.
Europe19, 100444. https://doi.org/10.1016/j.lanepe.2022.100444

 

Rapid Responses:

1. Barman-Aksözen, Hauke, Falchetto (2023): A rare disease patient perspective on the proposed changes
of orphan drug regulation. https://www.bmj.com/content/381/bmj-2022-072796/rr

2. Barman-Aksözen, Falchetto (2023) We have already lost our trust in NICE – Our real-life case.
https://www.bmj.com/content/383/bmj.p2571/rr-3