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.

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),

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.

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.

5. Falchetto R. (2020). The Patient Perspective: A Matter of Minutes. The patient13(1), 1–6.

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.


Correspondence and letters:

1. Granata, F., Dechant, C., & Falchetto, R. (2023). Dersimelagon in Erythropoietic Protoporphyrias. The
New England journal of medicine388(26), 2491–2492.

2. Barman-Aksözen J. (2022). Are payors ready for transparent prices yet?. The Lancet regional health.
Europe19, 100444.


Rapid Responses:

1. Barman-Aksözen, Hauke, Falchetto (2023): A rare disease patient perspective on the proposed changes
of orphan drug regulation.

2. Barman-Aksözen, Falchetto (2023) We have already lost our trust in NICE – Our real-life case.