Tofersen Program – ALS

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The Tofersen program

What the Tofersen program does

What the Tofesen program does

The Tofersen program is an offer in the outpatient partner care network and a component of our ALS pharmacy program.

The Tofersen program includes Tofersen pharmacy care and medical research on SOD1-ALS.

Patients with a new diagnosis of SOD1-ALS can contact outpatient partners nationwide to find a suitable medical facility for Tofersen therapy, if necessary, and to coordinate care through a specialized ALS pharmacy.

The decision as to whether Tofersen can be administered lies with the attending physician and is an individual decision.

Questions? Please contact us.

Do you have questions about the Tofersen program? We will be happy to help you!

Julia Schubert

Coordination and specialization in ALS

Peggy Schumann

Medical research and Tofersen program

Dr. Dr. Susanne Spittel

Head of Research and Pharmacy Programs

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What is the Tofersen program?

From July 2024, Ambulanzpartner will launch the Tofersen program, which includes a Tofersen pharmacy supply and medical research on SOD1-ALS. Patients with a confirmed SOD1 mutation will be supported in their transition to specialized pharmacies in Germany, which will supply Tofersen at the monthly treatment appointments and ensure timely availability. Patients with a new diagnosis of SOD1-ALS can contact outpatient partners nationwide to find a suitable medical facility for Tofersen therapy, if necessary, and to coordinate care through a specialized ALS pharmacy.

About Tofersen

Tofersen (trade name Qalsody; manufacturer Biogen) is used in 2% of all ALS patients – if there is a mutation in the SOD1 gene. It is the first drug to treat a genetic form of ALS (SOD1-ALS) and can therefore be regarded as a medical and scientific breakthrough. Tofersen is a genetic drug from the group of antisense oligonucleotides (ASOs). ASOs are synthetic DNA that can therapeutically influence the cellular process from genetic material (genome) to messenger RNA (transcription) to the synthesis of a protein (translation).

Further links

Meyer T, Schumann P, Weydt P, Petri S, Weishaupt JH, Weyen U, Koch JC, Günther R, Regensburger M, Boentert M, Wiesenfarth M, Koc Y, Kolzarek F, Kettemann D, Norden J, Bernsen S, Elmas Z, Conrad J, Valkadinov I, Vidovic M, Dorst J, Ludolph AC, Hesebeck-Brinckmann J, Spittel S, Münch C, Maier A, Körtvélyessy P. Clinical and patient-reported outcomes and neurofilament response during tofersen treatment in SOD1-related ALS-A multicenter observational study over 18 months. Muscle Nerve. 2024 Sep;70(3):333-345. to view the publication click here.

Meyer T, Schumann P, Weydt P, Petri S, Koc Y, Spittel S, Bernsen S, Günther R, Weishaupt JH, Dreger M, Kolzarek F, Kettemann D, Norden J, Boentert M, Vidovic M, Meisel C, Münch C, Maier A, Körtvélyessy P. Neurofilament light-chain response during therapy with antisense oligonucleotide tofersen in SOD1-related ALS: Treatment experience in clinical practice. Muscle Nerve. 2023 Jun;67(6):515-521. to view the publication click here.

Tofersen Program – ALS

The Tofersen program

The Tofersen program

Questions? Please contact us.

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