Advocacy of Key Opinion Leaders

Key opinion leaders speak about the benefits of afamelanotide

“Afamelanotide has revolutionized my life. With whispers of this treatment in the pipeline for so long, I am delighted that it has been made available in my lifetime.”

Polańska, A., Wegner, J., Nutbohm, P., Staubach, P., Żaba, R., Dańczak-Pazdrowska, A., & Jenerowicz, D. (2024).
Afamelanotide in protoporphyria and other skin diseases: A review. Advances in Dermatology and Allergology, 41(2), 149–154.

“…afamelanotide was safe, well tolerated and showed possible reduction in infarct core volume in our safety and feasibility study involving small sample of AIS patients. Potent MSH analogues such as afamelanotide have high therapeutic potential in AIS. Further large, randomized studies are required.”

Stanislaus, V., Kam, A., Murphy, L., Wolgen, P., Walker, G., Bilbao, P., & Cloud, G. C. (2023).
A feasibility and safety study of afamelanotide in acute stroke patients—An open label, proof of concept, phase iia clinical trial. BMC Neurology, 23(1), 281.

“Afamelanotide is a convincing enriching, sometimes off‑label, treatment option that physicians should take advantage of, however in diseases beyond EPP the further studies on a larger group of patients with long‑term efficacy evaluation should be considered.”

O’Reilly, M., McGuire, V. A., & Dawe, R. S. (2024).
Erythropoietic protoporphyria and afamelanotide: A patient's perspective. Clinical and Experimental Dermatology, 49(2), 186–187.

“This study highlights a dramatic clinical benefit of afamelanotide in relation to light tolerance and QoL in protoporphyria”

Leaf, R.A, Naik, H, Jiang, P.Y, Elmariah, S.B, Hodges, P, Mead, J, Trinidad, J, Saberi, B, Tran, B, Valiante, S, Mernick, F, Leaf, D.E, Anderson, K.E, Dickey, A.K. (2024).
Afamelanotide for Treatment of the Protoporphyrias: Impact on Quality of Life and Laboratory Parameters in a US Cohort. Life, 14(6), 689.

Case study on use of afamelodtide in vitiligo – presented to American Academy of Dermatology, March 2024

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