Compassionate use - Medical need

The Royal Decree of 25 April 2014 (RD in French version) amending the Royal Decree of 14 December 2006 on medicinal products for human and veterinary use (RD in french version) was published in the Belgian Official Journal on 12 June 2014 and comes into effect on 1 July 2014.

All compassionate use programs and medical need programs submitted from that date must follow the procedure described in that text.

The FAMHP will request a contribution for each file submitted. The FAMHP requests no longer to make advfintepl

ance payments, but to wait for the invoice (or invitation to pay) with structured notice for the payment. More information about the new method can be found here. The amount of the contribution for Unmet Medical Need files can be found here. Please indicate in the cover letter to whom the invoice should be sent.

The guidance describing, among others, the process to submit a compassionate use program and medical need program is here available. You will also find below, the appendices of this new guidance :

  • CUP-UMN guidance
  • Annex I :     Royal Decree of 25 April 2014 amending the Royal Decree of 14 December 2006 (french and dutch version)
  • Annex II :    Application form to request a Compassionate Use Program or a Medical Need Program
  • Annex III :   Template of Compassionate Use Program protocol. New version 27/06/2023
  • Annex IV :   Summarized information for publication (EN-FR-NL)
  • Annex V :    Labeling
  • Annex VI :   Template of Medical Need Program protocol. New version 27/06/2023
  • Annex VII :  CUP Physician Declaration
  • Annex VIII : MNP Physician Declaration
  • Annex IX : e-submission through the CESP: this procedure must be followed exactly
  • Annex X : Application form re-evaluation

Please submit any specific questions via e-mail at umn@afmps-fagg.be.

FAQ

A list of frequently asked questions regarding the application for UMN can be found below and will be regularly updated :

FAQ

Authorised programs

Commercial name Active substance Indication Last update
Mexiletine PR Mexiletine Mexiletine Prolonged Release (mexiletine-PR) for the treatment of adult Non-Dystrophic Myotonia 26/06/2026
Zepzelca Lurbinectedin The indication for the Compassionate Use Program (CUP) is: “Zepzelca (lurbinectedin), in combination with atezolizumab, is indicated for the maintenance treatment of adult patients with extensive-stage small cell lung cancer (ES-SCLC) whose disease has not progressed after first-line induction therapy with atezolizumab, carboplatin and etoposide”. 01/07/2026
Atrasentan Atrasentan Atrasentan is indicated for the treatment of adults with primary IgA nephropathy at risk of disease progression, with a urine protein excretion ≥1g/day and < 3.5g/day. 25/06/2026
Tibsovo Ivosidenib Monotherapy for the treatment of adult patients with acute myeloid leukemia (AML) and an isocitrate dehydrogenase-1 (IDH1) R132 mutation not responding to initial induction therapy or with relapsed disease after initial induction therapy who are no longer a candidate for intensive chemotherapy 18/06/2026
Jyseleca® Filgotinib Subjects with axial spondyloarthritis (axSpA) who have participated in the previous filgotinib clinical trial OLINGUITO (GLPG0634-CL-336) in Belgium and who, based on the clinical judgement of their treating physician, may benefit from continued treatment.
 
26/05/2026
Sparsentan Sparsentan Treatment in adults with primary immunoglobulin A nephropathy (IgAN) with a urine protein excretion > 1g/day 20/04/2026
CENRIFKI Tolebrutinib  Tolebrutinib is indicated for the treatment of non-relapsing secondary progressive multiple sclerosis (nrSPMS) in adults. 10/04/2026
Zidesamtinib Zidesamtinib Treatment of patients with advanced ROS1 fusion-positive non-small cell lung cancer (ROS1+ NSCLC) who have previously received ≥ 1 prior ROS1 tyrosine kinase inhibitor (TKI) 20/03/2026
Itovebi Inavolisib Treatment of adult patients with PIK3CA-mutated, oestrogen receptor (ER)-positive, HER2-negative, locally advanced or metastatic breast cancer (LA/mBC) following recurrence on or within 12 months of completing adjuvant endocrine treatment. 09/03/2026
Fosmanogepix Manogepix Treatment of patients with Invasive Mold Infections (IMIs). 11/12/2025
Imfinzi Durvalumab Imfinzi® (durvalumab) in combination with FLOT chemotherapy as neoadjuvant and adjuvant treatment followed by adjuvant Imfinzi® monotherapy for the treatment of adults with resectable gastric or gastro-oesophageal junction adenocarcinoma (GC/GEJC). 27/05/2026
Pedmarqsi® Sodium thiosulfate Prevention of ototoxicity induced by cisplatin (CIS) chemotherapy in patients 1 month to < 18 years of age with localized, non-metastatic, solid tumors. 14/08/2025
Zynyz Retifanlimab first-line treatment of adult patients with metastatic or with inoperable locally recurrent Squamous Carcinoma of the Anal Canal (SCAC) with retifanlimab in combination with carboplatin and paclitaxel 06/03/2026
Finerenone Finerenone Chronic Kidney Disease in pediatric patients who participated in the FIONA open label extension study. 25/03/2026
Amvuttra vutrisiran treatment of patients with transthyretin-mediated amyloidosis (ATTR amyloidosis) with cardiomyopathy (ATTR-CM) 27/10/2025
plozasiran plozasiran Familial Chylomicronemia Syndrome (FSC) 23/04/2025
Welireg® Belzutifan Belzutifan (Welireg®) is indicated for the treatment of adult patients with von Hippel-Lindau (VHL) disease who require therapy for VHL associated, localized renal cell carcinoma (RCC), central nervous system (CNS) hemangioblastomas, or pancreatic neuroendocrine tumours (pNET), and for whom localized procedures are unsuitable. 19/06/2026
Vyvgart efgartigimod alfa Medical Need Program with Vyvgart 1000 mg solution for subcutaneous injection as monotherapy for adult patients with progressive or relapsing active Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP), after prior treatment with immunoglobulins and/or corticosteroids. 25/06/2026
Blenrep Belantamab mafodotin Belantamab mafodotin is indicated in adults for the treatment of relapsed or refractory multiple myeloma:
•    in combination with bortezomib and dexamethasone in patients who have had at least one prior therapy; and
•    in combination with pomalidomide and dexamethasone in patients who have received at least one prior therapy including lenalidomide
 
17/07/2025
Duvyzat Givinostat Duvyzat is indicated for the treatment of Duchenne muscular dystrophy (DMD) in ambulant patients, aged 6 years and older, and with concomitant corticosteroid treatment. 12/02/2026
Teplizumab Teplizumab Teplizumab is indicated for the treatment of adult and pediatric patients aged 8 years and older with stage 2 type 1 diabetes to delay the onset of stage 3 type 1 diabetes
Teplizumab is administered by intravenous infusion (over a minimum of 30 minutes), using a body surface area-based dosing, once daily for 14 consecutive days as follows:
•    Day 1: 65 μg/m2
•    Day 2: 125 μg/m2
•    Day 3: 250 μg/m2
•    Day 4: 500 μg/m2
•    Days 5 through 14: 1030 μg/m2
Should a scheduled teplizumab infusion be missed, treatment shall be continued on the next scheduled day and any remaining doses be administered on subsequent days to complete the 14-day treatment. Two doses must not be administered on the same day.
Teplizumab must be diluted prior to administration.
02/04/2025
Aspaveli Pegcetacoplan Treatment of primary immune complex and C3-mediated glomerulopathy 29/05/2026
Fintepla Fenfluramine hydrochloride treatment of patients with CDKL5 deficiency disorder who completed study ZX008-2103 (EP0216; EudraCT number 2021-003222-76) 06/01/2026
Voranigo vorasidenib treatment of predominantly non-enhancing grade 2 astrocytoma or oligodendroglioma with an IDH1 R132 or IDH2 R172 mutation in adult and adolescent patients aged 12 years and older and weighing >40kg who only had surgical intervention and are not in immediate need of radiotherapy or chemotherapy 31/03/2026
Belumosudil Belumosudil chronic Graft Versus Host Disease (cGVHD) after failure of at least 2 prior lines of systemic therapy 07/11/2024
Vyvgart efgartigimod alfa Acetylcholine receptor antibody negative patients with gMG who participated in and exited study ARGX-113-2002 OR who were treated via early access

07/07/2026

Brukinsa Zanubrutinib monotherapy to adult patients with relapsing or refractory Mantle Cell Lymphoma (MCL) who have received at least 1 prior therapy. 13/11/2025
Bimzelx Bimekizumab Adults with moderate to severe Hidradenitis Suppurativa (HS) (acne inversa) 29/10/2024
Winrevair  Sotatercept (MK-7962) Adult patients with Pulmonary Arterial Hypertension (PAH) with WHO Functional Class (FC) II/III or FC IV. 10/09/2025
Fintepla for DS Fenfluramine (as fenfluramine hydrochloride) Fintepla for the treatment of patients with Dravet syndrome who completed the open label study ZX008-1900 (EP0215; EudraCT number 2019-001331-31), or the open label study titled “Fenfluramine als anti-epilepticum bij Dravet syndroom en epileptische encephalopathieën” (EudraCT number 2011-004114-42), or the open label study EP0213 (ClinicalTrials.gov ID number NCT06118255) and, in the opinion and the clinical judgement of the treating physician, would continue to benefit from a treatment with Fintepla 2.2 mg/ml oral solution (fenfluramine), which is not yet commercially available in Belgium. 06/06/2025
Olorofim Olorofim invasive fungal infections in patients lacking alternative treatment options. 18/01/2024
Nirogacestat Nirogacestat treatment of Progressing Desmoid Tumors/Aggressive Fibromatosis (DT/AF) 02/06/2025

Rybrevant

amivantamab

treatment of adult patients with locally advanced or metastatic non-small cell lung cancer (NSCLC) who have epidermal growth factor receptor (EGFR) Exon 20 insertion (Exon20ins), and whose disease has progressed during or after current standard of care platinum-based chemotherapy.

27/10/2025

 

Ocaliva®

Obeticholic acid

Treatment of patients with Primary Biliary cholangitis who completed the Long-Term Safety Extension of the POISE phase 3 trial (747-301 / EudraCT 2011-004728-36)

07/01/2026

Myalepta

Metreleptine

as an adjunct to diet as a replacement therapy to treat the complications of leptin deficiency in lipodystrophy (LD) patients:
-    with confirmed congenital generalised LD (Berardinelli-Seip syndrome) or acquired generalised LD (Lawrence syndrome) in adults and children 2 years of age and above
-    with confirmed familial partial LD or acquired partial LD (Barraquer-Simons syndrome), in adults and children 12 years of age and above for whom standard treatments have failed to achieve adequate metabolic control.

07/07/2026

 

Pritelivir

Pritelivir

treatment of acyclovir-resistant mucocutaneous HSV (Herpes Simplex Virus) infections in immunocompromised patient

29/08/2025

Privigen

Human immunoglobuline

Treatment of bleeds in patients with acquired von Willebrand syndrome.

07/10/2022

Ozawade

pitolisant

to improve wakefulness and reduce excessive daytime sleepiness (EDS) in adult patients with obstructive sleep apnoea (OSA) whose EDS has not been satisfactorily treated by, or who have not tolerated, OSA primary therapy, such as continuous positive airway pressure (CPAP)

07/10/2022

Kanuma

sebelipase alfa

Treatment of paediatric and adult patients with lysosomal acid lipase deficiency (LAL-D) who participated to the open label phase 2 study (LAL-C06).

11/08/2022

Scemblix

asciminib

treatment of Chronic Myelogenous Leukemia (CML) patients in chronic phase with a T315I mutation and previously treated with ≥2 TKIs

28/11/2024

Leriglitazone

Leriglitazone

Treatment of Friedreich’s Ataxia

09/08/2022

Velmanase alfa®

Velmanase alfa

Treatment of non-neurological manifestations in patients with mild to moderate alpha-mannosidosis

24/06/2026

 

On hold programs

Closed programs

Last updated on