PUBLICATIE LIJST 29 GEBLOKKEERDE DONOREN
Version Français en bas - English version down below
Op dinsdag 18 november 2025, werd in de Kamer tijdens een commissie over de donorproblematiek door het FAGG een lijst van 29 spermadonoren getoond die tussen 2022 en 2025 geblokkeerd werden. Deze donoren werden geblokkeerd omdat er ernstige medische risico’s bij hen of diens donorkinderen vastgesteld werden. In een aantal gevallen lag het overlijden van een donorkind aan de basis van de uiteindelijke blokkering.
Bij alle 29 donoren werd bovendien de wettelijke limiet overschreden: in België mag het sperma van één donor maar gebruikt worden om gezinnen voor maximaal zes vrouwen te vormen. Minister Vandenbroucke vertelde eerder dat het in deze gevallen om 7 tot 27 gezinnen per donor gaat.
Uit goede bron vernamen we dat betrokken ouders en donorkinderen nog niet ingelicht werden over de overschrijding, mogelijks zelfs nog niet over genetische en medische risico's.
Omdat wij vinden dat alle betrokkenen recht hebben op informatie die hem of haar aanbelangt, publiceren we de lijst.
Hoe weet je of jij tot één van deze groepen behoort?
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Je bent normaal gezien tussen 2022 en 2025 door je ziekenhuis geïnformeerd dat de donor geblokkeerd werd, met uitleg over de medische reden.
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In de lijst hieronder kan je zien wanneer welke donor geblokkeerd werd en waarom.
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Komt de medische reden overeen met wat jouw ziekenhuis vertelde? En werd je kort na de blokkering geïnformeerd? Dan is de kans groot dat je tot de betrokken groep behoort.
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Hieronder kan je de lijst terugvinden. Je kan hem ook hier downloaden.
Weet dat je ons altijd mag contacteren, daar we zelf al over iets meer informatie beschikken dan hieronder getoond. We kunnen ook helpen in informatie te vergaren. Daarnaast kunnen we je mogelijks met andere gezinnen in contact brengen.
Donor | Bank | Date of block | # families | Descripiton |
|---|---|---|---|---|
Donor 1 | ESB | 23MAY2022 | 7 | Donor is a carrier of classic galactosemia/Shwachman-Diamond syndrome. |
Donor 2 | ESB | 11JUL2022 | 19 | A pathogenic variant in the PHA gene has been identified in donor and he is a carrier of PKU. |
Donor 3 | ESB | 02SEP2022 | 10 | Donor is a carrier of autosomal recessive inherited mild-to-moderate sensorineural hearing loss due to a STRC deletion. |
Donor 4 | ESB | 15DEC2022 | 14 | The donor is a carrier of congenital disorder of glycosylation type Ia. |
Donor 5 | ESB | 18JAN2023 | 17 | Hip dysplasia in a donor confers an increased risk to his offspring. |
Donor 6 | ESB | 20MAR2023 | 9 | Donor is a carrier of c.10955delC(p.Pro3652Glnfs*2) in the PKHD1 gene. |
Donor 7 | ESB | 24MAR2023 | 11 | A deletion of exon 11-14 in the GLI2 gene in a donor child does confer an increased risk to donor’s offspring. |
Donor 8 | ESB | 15JUN2023 | 8 | Donor is compound heterozygous for hemochromatosis. |
Donor 9 | ESB | 04JUL2023 | 8 | A duplication of 22q11 in the donor might confer an increased risk to his offspring. |
Donor 10 | ESB | 05JUL2023 | 12 | Hearing impairment in a donor child may confer an increased risk to donor’s offspring. |
Donor 11 | ESB | 08AUG2023 | 11 | A 57 kb deletion in CTNS-gene in a donor child does confer an increased risk to donor’s offspring. |
Donor 12 | ESB | 30OCT2023 | 38 | TP53 variant in a donor does confer an increased risk to donor’s offspring.
Donor number 7069, alias 'Kjeld'. |
Donor 13 | ESB | 08NOV2023 | 11 | Child diagnosed with SCID, severe combined immune defiency. Due to the fact that donor is known carrier of a recessive gene variant. |
Donor 14 | ESB | 07DEC2023 | 12 | Zellweger syndrome in a donor child does confer an increased risk to donor’s offspring. |
Donor 15 | ESB | 20DEC2023 | 7 | Isovaleric acidemia in a donor child, and subsequent genetic analysis showing that donor is heterozygous carrier of a pathogenic variant in the IVD gene; c.158G>A, p.Arg53His, does confer an increased risk to donor’s offspring.
|
Donor 16 | ESB | 31JAN2024 | 10 | Hydronephrosis in a donor child does confer an increased risk to donor’s offspring. |
Donor 17 | ESB | 1MAY2024 | 18 | MSH2 variant in a donor does confer an increased risk to donor’s offspring. His gametes are to be permanently blocked. |
Donor 18 | ESB | 25JUN2024 | 14 |
A pathogenic variant in the GAA gene does confer an increased risk to a donor child. His gametes are to be permanently blocked.
|
Donor 19 | ESB | 07NOV2024 | 8 | Pathogenic MYBPC3 variant in a fetus and found in the donor confers an increased risk to donor’s offspring. |
Donor 20 | ESB | 19NOV2024 | 17 | Cardiomyopathy in a donor child and subsequent diagnosis of heterozygosity of a pathogenic variant in APLK3 gene in the donor confers an increased risk to donor’s offspring. The donor is blocked and his gametes can no longer be used. |
Donor 21 | ESB | 20JAN2025 | 10 | Child was diagnosed with type IV spinal muscular atrophy (SMA). SMA is an autosomal recessive disease. The risk for future donor children is significantly increased. |
Donor 22 | ESB | 21JAN2025 | 17 | Heterozygous deletions at 2p16.3 involving NRXN1 and intragenic mutations of the same gene have been reported in individuals affected by a wide spectrum of neurodevelopmental and psychiatric disorders, including isolated intellectual disability (ID)/global develop-mental delay (GDD), autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), schizophrenia and bipolar disorder. In a proportion of these patients, neurological involvement (i.e. epilepsy),facial dysmorphism, and congenital heart defects have been observed as associated features. Genotype–phenotype correlations have also been reported. |
Donor 23 | Cryos | 25FEB2025 | 9 | A child has been diagnosed with Usher Syndrome type 2 and genetic test has found two mutations in USH2A.
Usher Syndrome type 2 is inherited in a recessive manner, which means that both genetic parents most likely are carriers of the condition.
The risk of an affected child is lower than 1%. Donor gametes were blocked for new customers (<1% recurrence risk) 02NOV2022 but can be used for siblings. |
Donor 24 | ESB | 30APR2025 | 27 | A child is reported to have Marfan syndrome. The variant FBN1 (NM_000138.4): c.-5880_164+4097del heterozygot. |
Donor 25 | ESB | 07JUL2025 | 19 | The donor is found to be a healthy carrier of a pathogenic variant in the CYP21A2 gene. Non-classical congenital adrenal hyperplasia (CAH) due to compound heterozygous mutations in the CYP21A2 gene in a donor child confers an increased risk to donor’s offspring. |
Donor 26 | ESB | 19AUG2025 | 9 | Deletion of the CYP21A2 gene in a donor does confer an increased risk to donor’s offspring. |
Donor 27 | ESB | 13OCT2025 | 12 | A pathogenic (class V) genetic variant was observed in the Thyroglobulin (TG) gene. Congenital hypothyroidism in a donor child does confer an increased risk to donor’s offspring. |
Donor 28 | ESB | 20OCT2025 | 22 | The donor is a carrier of Metachromatic leukodystrophy (MLD), since a pathogenic genetic variant in the Arylsulfatase A (ARSA) gene is identified in a heterozygous state. A pathogenic genetic variant :NM_000487.6:c.917C>T, identified in the donor does confer an increased reproductive risk. |
Donor 29 | ESB | OCT/NOV2025 | 15 | The donor has been under investigation and the
results have shown that he is a healthy carrier of
Spinal Muscular Atrophy, since MLPA analysis shows
a deletion of one of the SMN1 genes. |
Wat kan je doen als je tot één van de groepen behoort?
1. Contacteer je fertiliteitscentrum en het FAGG
Vraag hen om:
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Bevestiging dat jij tot één van de groepen behoort
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De jaren waarin kinderen met hetzelfde sperma werden geboren
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Het nummer en alias van de donor (bij de TP53-donor is dat door de minister openbaar gemaakt; jij hebt recht op dezelfde informatie)
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Te zeggen tot het hoeveelste gezin jij behoort. Vanaf het 7e gezin heb je meer juridische mogelijkheden richting overheid, FAGG, ziekenhuis en/of spermabank
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E-mailadressen FAGG: icm@fagg.be en management@fagg.be.
2. Overweeg om een klacht in te dienen bij de politie of het parket
Zo kan er een onafhankelijk onderzoek gestart worden. Dat is belangrijk om tijdig duidelijkheid te krijgen over mogelijke fouten en aansprakelijkheid.
3. Neem contact op met een advocaat
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Heb je een rechtsbijstandsverzekering? Dan worden de kosten meestal gedekt.
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Een rechtszaak kan helpen om schadevergoeding te vragen en verantwoordelijkheden af te dwingen.
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Niet alleen gezinnen 7 en hoger kunnen stappen ondernemen; ook het 1ste tot het 6e gevormde gezin kunnen dit overwegen. Zij lijden namelijk ook schade en gevolgen door dat wetgeving en contracten niet nageleefd werden.
4. Contacteer ons
Wij kunnen helpen door:
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Informatie te verzamelen of door te geven.
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Je in contact te brengen met andere betrokken ouders of donorkinderen.
LISTE PUBLIÉE DES 29 DONNEURS BLOQUÉ
English version down below
Le mardi 18 novembre 2025, lors d’une commission à la Chambre concernant la problématique des donneurs, l’AFMPS a présenté une liste de 29 donneurs de sperme ayant été bloqués entre 2022 et 2025. Ces donneurs ont été bloqués en raison de risques médicaux graves identifiés chez eux ou chez leurs enfants issus du don. Dans plusieurs cas, le décès d’un enfant issu du don a mené à la décision finale de les bloquer.
Pour les 29donneurs, la limite légale a en outre été dépassée : en Belgique, le sperme d’un même donneur ne peut être utilisé que pour former des familles pour un maximum de six femmes. Le ministre Vandenbroucke avait déjà indiqué que, dans ces cas, il s’agissait de 7 à 27 familles par donneur.
D’après nos informations, les parents concernés et les personnes issues du don n’ont pas encore été informés du dépassement de cette limite, et peut-être même pas des risques génétiques ou médicaux.
Parce que nous estimons que toutes les personnes concernées ont droit aux informations qui les touchent directement, nous publions cette liste
Comment savoir si vous faites partie des groupes concernés ?
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Normalement, entre 2022 et 2025, votre hôpital vous a informé que le donneur avait été bloqué et vous a expliqué la raison médicale.
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Dans la liste ci-dessous, vous pouvez voir quand chaque donneur a été bloqué et pour quelle raison.
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La raison médicale correspond-elle à ce que votre hôpital vous a communiqué ? Et avez-vous été informé(e) peu après le blocage ? Alors il est probable que vous fassiez partie du groupe concerné.
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Vous trouverez la liste ci-dessous. Vous pouvez aussi la télécharger ici.
Sachez que vous pouvez toujours nous contacter : nous disposons déjà de quelques informations supplémentaires par rapport à ce qui est présenté ci-dessous. Nous pouvons également vous aider à rassembler des informations et éventuellement vous mettre en contact avec d’autres familles.
Donor | Bank | Date of block | Descripiton |
|---|---|---|---|
Donor 1 | ESB | 23MAY2022 | Donor is a carrier of classic galactosemia/Shwachman-Diamond syndrome. |
Donor 2 | ESB | 11JUL2022 | A pathogenic variant in the PHA gene has been identified in donor and he is a carrier of PKU. |
Donor 3 | ESB | 02SEP2022 | Donor is a carrier of autosomal recessive inherited mild-to-moderate sensorineural hearing loss due to a STRC deletion. |
Donor 4 | ESB | 15DEC2022 | The donor is a carrier of congenital disorder of glycosylation type Ia. |
Donor 5 | ESB | 18JAN2023 | Hip dysplasia in a donor confers an increased risk to his offspring. |
Donor 6 | ESB | 20MAR2023 | Donor is a carrier of c.10955delC(p.Pro3652Glnfs*2) in the PKHD1 gene. |
Donor 7 | ESB | 24MAR2023 | A deletion of exon 11-14 in the GLI2 gene in a donor child does confer an increased risk to donor’s offspring. |
Donor 8 | ESB | 15JUN2023 | Donor is compound heterozygous for hemochromatosis. |
Donor 9 | ESB | 04JUL2023 | A duplication of 22q11 in the donor might confer an increased risk to his offspring. |
Donor 10 | ESB | 05JUL2023 | Hearing impairment in a donor child may confer an increased risk to donor’s offspring. |
Donor 11 | ESB | 08AUG2023 | A 57 kb deletion in CTNS-gene in a donor child does confer an increased risk to donor’s offspring. |
Donor 12 | ESB | 30OCT2023 | TP53 variant in a donor does confer an increased risk to donor’s offspring.
Donor number 7069, alias 'Kjeld'. |
Donor 13 | ESB | 08NOV2023 | Child diagnosed with SCID, severe combined immune defiency. Due to the fact that donor is known carrier of a recessive gene variant. |
Donor 14 | ESB | 07DEC2023 | Zellweger syndrome in a donor child does confer an increased risk to donor’s offspring. |
Donor 15 | ESB | 20DEC2023 | Isovaleric acidemia in a donor child, and subsequent genetic analysis showing that donor is heterozygous carrier of a pathogenic variant in the IVD gene; c.158G>A, p.Arg53His, does confer an increased risk to donor’s offspring.
|
Donor 16 | ESB | 31JAN2024 | Hydronephrosis in a donor child does confer an increased risk to donor’s offspring. |
Donor 17 | ESB | 1MAY2024 | MSH2 variant in a donor does confer an increased risk to donor’s offspring. His gametes are to be permanently blocked. |
Donor 18 | ESB | 25JUN2024 |
A pathogenic variant in the GAA gene does confer an increased risk to a donor child. His gametes are to be permanently blocked. |
Donor 19 | ESB | 07NOV2024 | Pathogenic MYBPC3 variant in a fetus and found in the donor confers an increased risk to donor’s offspring. |
Donor 20 | ESB | 19NOV2024 | Cardiomyopathy in a donor child and subsequent diagnosis of heterozygosity of a pathogenic variant in APLK3 gene in the donor confers an increased risk to donor’s offspring. The donor is blocked and his gametes can no longer be used. |
Donor 21 | ESB | 20JAN2025 | Child was diagnosed with type IV spinal muscular atrophy (SMA). SMA is an autosomal recessive disease. The risk for future donor children is significantly increased. |
Donor 22 | ESB | 21JAN2025 | Heterozygous deletions at 2p16.3 involving NRXN1 and intragenic mutations of the same gene have been reported in individuals affected by a wide spectrum of neurodevelopmental and psychiatric disorders, including isolated intellectual disability (ID)/global develop-mental delay (GDD), autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), schizophrenia and bipolar disorder. In a proportion of these patients, neurological involvement (i.e. epilepsy),facial dysmorphism, and congenital heart defects have been observed as associated features. Genotype–phenotype correlations have also been reported. |
Donor 23 | Cryos | 25FEB2025 | A child has been diagnosed with Usher Syndrome type 2 and genetic test has found two mutations in USH2A.
Usher Syndrome type 2 is inherited in a recessive manner, which means that both genetic parents most likely are carriers of the condition.
The risk of an affected child is lower than 1%. Donor gametes were blocked for new customers (<1% recurrence risk) 02NOV2022 but can be used for siblings. |
Donor 24 | ESB | 30APR2025 | A child is reported to have Marfan syndrome. The variant FBN1 (NM_000138.4): c.-5880_164+4097del heterozygot. |
Donor 25 | ESB | 07JUL2025 | The donor is found to be a healthy carrier of a pathogenic variant in the CYP21A2 gene. Non-classical congenital adrenal hyperplasia (CAH) due to compound heterozygous mutations in the CYP21A2 gene in a donor child confers an increased risk to donor’s offspring. |
Donor 26 | ESB | 19AUG2025 | Deletion of the CYP21A2 gene in a donor does confer an increased risk to donor’s offspring. |
Donor 27 | ESB | 13OCT2025 | A pathogenic (class V) genetic variant was observed in the Thyroglobulin (TG) gene. Congenital hypothyroidism in a donor child does confer an increased risk to donor’s offspring. |
Donor 28 | ESB | 20OCT2025 | The donor is a carrier of Metachromatic leukodystrophy (MLD), since a pathogenic genetic variant in the Arylsulfatase A (ARSA) gene is identified in a heterozygous state. A pathogenic genetic variant :NM_000487.6:c.917C>T, identified in the donor does confer an increased reproductive risk. |
Que pouvez-vous faire si vous faites partie de l’un des groupes concernés ?
1. Contactez votre centre de fertilité et l’AFMPS
Demandez-leur :
Adresses e-mail de l’AFMPS : icm@fagg.be en management@fagg.be.
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La confirmation que vous faites bien partie de l’un des groupes concernés
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Les années durant lesquelles des enfants sont nés avec le même sperme
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Le numéro et l’alias du donneur (pour le donneur porteur de TP53, ces informations ont été rendues publiques par le ministre ; vous avez droit aux mêmes renseignements)
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De vous indiquer à quelle famille vous correspondez. À partir de la 7ᵉ famille, vous disposez de davantage de possibilités juridiques envers les autorités, l’AFMPS, l’hôpital et/ou la banque de sperme
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2. Envisagez de déposer une plainte auprès de la police ou du parquet
Cela peut permettre l’ouverture d’une enquête indépendante. C’est essentiel pour obtenir rapidement des éclaircissements sur d’éventuelles erreurs et sur les responsabilités.
3. Contactez un avocat
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Disposez-vous d’une assurance protection juridique ? Dans ce cas, les frais sont généralement couverts.
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Une action en justice peut vous aider à demander une indemnisation et à faire reconnaître les responsabilités.
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Non seulement les familles 7 et suivantes peuvent entreprendre des démarches, mais les familles 1 à 6 peuvent également le faire, car elles subissent elles aussi un préjudice et des conséquences du fait que la législation et les contrats n’ont pas été respectés.
4. Contactez-nous
Nous pouvons vous aider en :
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Rassemblant ou transmettant des informations
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Vous mettant en contact avec d’autres parents concernés ou avec des personnes issues du don
PUBLICATION OF THE LIST OF 29 BLOCKED SPERM DONORS
On Tuesday, 18 November 2025, during a parliamentary committee meeting on donor-related issues, the FAMHP presented a list of 29 sperm donors who were blocked between 2022 and 2025. These donors were blocked because serious medical risks were identified in them or in their donor-conceived children. In several cases, the death of a donor-conceived child was the reason that ultimately led to the blocking.
For all 29 donors, the legal limit was exceeded: in Belgium, the sperm of one donor may only be used to create families for a maximum of six women. Minister Vandenbroucke previously stated that in these cases, each donor was linked to between 7 and 27 families.
Reliable sources have informed us that the parents and donor-conceived individuals concerned have not yet been informed about this exceeding of the limit, and possibly not even about the genetic and medical risks.
Because we believe that every person involved has the right to information that concerns them, we are publishing the list.
How do you know if you belong to one of these groups?
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Normally, your hospital should have informed you between 2022 and 2025 that the donor had been blocked, along with an explanation of the medical reason.
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In the list below, you can see when each donor was blocked and for what reason.
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Does the medical reason match what your hospital told you? And were you informed shortly after the blocking? Then it is likely that you belong to the group concerned.
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You can find the list below. You can also download it here.
Please know that you can always contact us, as we already have access to slightly more information than what is shown below. We can also help you gather information. Additionally, we may be able to put you in touch with other families.
Donor | Bank | Date of block | Descripiton |
|---|---|---|---|
Donor 1 | ESB | 23MAY2022 | Donor is a carrier of classic galactosemia/Shwachman-Diamond syndrome. |
Donor 2 | ESB | 11JUL2022 | A pathogenic variant in the PHA gene has been identified in donor and he is a carrier of PKU. |
Donor 3 | ESB | 02SEP2022 | Donor is a carrier of autosomal recessive inherited mild-to-moderate sensorineural hearing loss due to a STRC deletion. |
Donor 4 | ESB | 15DEC2022 | The donor is a carrier of congenital disorder of glycosylation type Ia. |
Donor 5 | ESB | 18JAN2023 | Hip dysplasia in a donor confers an increased risk to his offspring. |
Donor 6 | ESB | 20MAR2023 | Donor is a carrier of c.10955delC(p.Pro3652Glnfs*2) in the PKHD1 gene. |
Donor 7 | ESB | 24MAR2023 | A deletion of exon 11-14 in the GLI2 gene in a donor child does confer an increased risk to donor’s offspring. |
Donor 8 | ESB | 15JUN2023 | Donor is compound heterozygous for hemochromatosis. |
Donor 9 | ESB | 04JUL2023 | A duplication of 22q11 in the donor might confer an increased risk to his offspring. |
Donor 10 | ESB | 05JUL2023 | Hearing impairment in a donor child may confer an increased risk to donor’s offspring. |
Donor 11 | ESB | 08AUG2023 | A 57 kb deletion in CTNS-gene in a donor child does confer an increased risk to donor’s offspring. |
Donor 12 | ESB | 30OCT2023 | TP53 variant in a donor does confer an increased risk to donor’s offspring.
Donor number 7069, alias 'Kjeld'. |
Donor 13 | ESB | 08NOV2023 | Child diagnosed with SCID, severe combined immune defiency. Due to the fact that donor is known carrier of a recessive gene variant. |
Donor 14 | ESB | 07DEC2023 | Zellweger syndrome in a donor child does confer an increased risk to donor’s offspring. |
Donor 15 | ESB | 20DEC2023 | Isovaleric acidemia in a donor child, and subsequent genetic analysis showing that donor is heterozygous carrier of a pathogenic variant in the IVD gene; c.158G>A, p.Arg53His, does confer an increased risk to donor’s offspring.
|
Donor 16 | ESB | 31JAN2024 | Hydronephrosis in a donor child does confer an increased risk to donor’s offspring. |
Donor 17 | ESB | 1MAY2024 | MSH2 variant in a donor does confer an increased risk to donor’s offspring. His gametes are to be permanently blocked. |
Donor 18 | ESB | 25JUN2024 |
A pathogenic variant in the GAA gene does confer an increased risk to a donor child. His gametes are to be permanently blocked. |
Donor 19 | ESB | 07NOV2024 | Pathogenic MYBPC3 variant in a fetus and found in the donor confers an increased risk to donor’s offspring. |
Donor 20 | ESB | 19NOV2024 | Cardiomyopathy in a donor child and subsequent diagnosis of heterozygosity of a pathogenic variant in APLK3 gene in the donor confers an increased risk to donor’s offspring. The donor is blocked and his gametes can no longer be used. |
Donor 21 | ESB | 20JAN2025 | Child was diagnosed with type IV spinal muscular atrophy (SMA). SMA is an autosomal recessive disease. The risk for future donor children is significantly increased. |
Donor 22 | ESB | 21JAN2025 | Heterozygous deletions at 2p16.3 involving NRXN1 and intragenic mutations of the same gene have been reported in individuals affected by a wide spectrum of neurodevelopmental and psychiatric disorders, including isolated intellectual disability (ID)/global develop-mental delay (GDD), autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), schizophrenia and bipolar disorder. In a proportion of these patients, neurological involvement (i.e. epilepsy),facial dysmorphism, and congenital heart defects have been observed as associated features. Genotype–phenotype correlations have also been reported. |
Donor 23 | Cryos | 25FEB2025 | A child has been diagnosed with Usher Syndrome type 2 and genetic test has found two mutations in USH2A.
Usher Syndrome type 2 is inherited in a recessive manner, which means that both genetic parents most likely are carriers of the condition.
The risk of an affected child is lower than 1%. Donor gametes were blocked for new customers (<1% recurrence risk) 02NOV2022 but can be used for siblings. |
Donor 24 | ESB | 30APR2025 | A child is reported to have Marfan syndrome. The variant FBN1 (NM_000138.4): c.-5880_164+4097del heterozygot. |
Donor 25 | ESB | 07JUL2025 | The donor is found to be a healthy carrier of a pathogenic variant in the CYP21A2 gene. Non-classical congenital adrenal hyperplasia (CAH) due to compound heterozygous mutations in the CYP21A2 gene in a donor child confers an increased risk to donor’s offspring. |
Donor 26 | ESB | 19AUG2025 | Deletion of the CYP21A2 gene in a donor does confer an increased risk to donor’s offspring. |
Donor 27 | ESB | 13OCT2025 | A pathogenic (class V) genetic variant was observed in the Thyroglobulin (TG) gene. Congenital hypothyroidism in a donor child does confer an increased risk to donor’s offspring. |
Donor 28 | ESB | 20OCT2025 | The donor is a carrier of Metachromatic leukodystrophy (MLD), since a pathogenic genetic variant in the Arylsulfatase A (ARSA) gene is identified in a heterozygous state. A pathogenic genetic variant :NM_000487.6:c.917C>T, identified in the donor does confer an increased reproductive risk. |
What can you do if you belong to one of the groups?
1. Contact your fertility centre and the FAMHP
Ask them for:
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Confirmation that you are part of one of the affected groups
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The years in which children were born using the same sperm
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The donor’s number and alias (for the TP53 donor, this was made public by the minister; you are entitled to the same information)
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Information on which family number you are. From the 7th family onward, you have more legal options towards the government, the FAMHP, the hospital and/or the sperm bank
FAMHP email addresses: icm@fagg.be en management@fagg.be.
2. Consider filing a complaint with the police or the public prosecutor’s office
This can initiate an independent investigation. It is important to obtain timely clarity about possible errors and liability.
3. Contact a lawyer
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Do you have legal assistance insurance? If so, the costs are usually covered.
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A legal action can help you seek compensation and enforce accountability.
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Not only families 7 and above can take action; families 1 to 6 may also consider doing so, as they too suffer harm and consequences from the failure to respect legislation and contractual obligations.
4. Contact us
We can help by:
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Collecting or sharing information
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Putting you in touch with other affected parents or donor-conceived individual
