Dor Yeshorim reduces the occurrence of fatal and debilitating genetic diseases in Jewish families worldwide through its premarital genetic screening program.

How it works

Blood samples are drawn and each participant receives an identification number – No names are used in the process to ensure complete confidentiality.

The samples are then sent to a laboratory where a panel of tests is run. Results are entered into a database under stringent quality checks.  

 When an individual is considering a partner in marriage, both parties exchange ID numbers and day and month of birth and call Dor Yeshorim’s easy-access, 24 hour automated hotline to request a compatibility check. Compatibility checks are fast, unlimited and free of charge and results are relayed via a call back to the numbers registered on file. 

The test results are compared in-house, if neither or only one is a carrier for a recessive disease, the match is safe and both parties are informed they can proceed. However, if they are both found to be carriers, they are informed that the match is incompatible. Dor Yeshorim offers genetic counselling for those found incompatible.

Services 

-Confidential pre-marital screening program 

-Collaboration with genomic experts the world over

-The go-to source for myriad genetic question. At no cost to the families, we provide professional, compassionate and sensitive guidance and referrals. 

-Assisting families with rare genetic diseases 

-Provide community leaders and Rabbis with the information they need to know about genetic issues so that they may better counsel their constituents

 -Mass screening drives at high schools, yeshivos and colleges throughout the world.

-The global resource in genetics for Jewish communities across the globe, advocating for advances in genetic research, innovations and screening

UK Dor Yesharim contacts

Manchester

Rabbi Mordechai Halpern

0161-792-2626

By appointment only

Stamford Hill

Refuah Diagnostics

Mr. Motty Friesel

07929-052-669

By appointment only

Golders Green Hendon

Mrs. Nahva Rose

07984-932-634

By appointment only

Gateshead

Mr. Pruim 07814-007-685

All private screenings are by appointment only - unless otherwise indicated.

Regular results are available in 3 weeks, Rush Priority results up to 7 business day and school / mass screenings in 3-4 months.

Price

Standard Panel- £250

Hearing Panel- £310

Standard Panel 

Aicardi-Goutieres Syndrome 

Ataxia Telangiectasia 

Autoimmune Polyglandular Syndrome type 1 

Brain Atrophy & Thin Corpus Callosum 

Bardet-Biedl Syndrome Type 2 

Bloom Syndrome 

Canavan Disease 

Congenital Adrenal Hyperplasia (CYP11B1) 

Congenital Heart Diseases (GDF1) 

Cystic Fibrosis 

Cystinosis Nephropathic 

Dihydrolipoamide Dehydrogenase Deficiency 

Familial Dysautonomia 

Familial Hyperinsulinemia 

Fanconi Anemia Type A 

Fanconi Anemia Type C 

Glycogen Storage Disease Type 1A 

Hereditary Spastic Paraparesis 

Hypomyelinating Leukodystrophy 12 

Hypomyelinating Leukodystrophy 13 

Inclusion Body Myopathy (HIBM) 

Infantile Cerebral-Cerebellar Atrophy 

Joubert Syndrome 

Leigh Syndrome 1 

Maple Syrup Urine Disease Type 1B 

Meckel-Gruber Syndrome Type 8 

Megalencephalic Leukoencephalopathy with Subcortical Cysts 

Mental Retardation 34, with Variant Lissencephaly 

Metachromatic Leukodystrophy 

Methylglutaconic Aciduria Type 3 (Costeff Syndrome) 

Mitochondrial Complex 1 Deficiency 

Mitochondrial Neurogastro Intestinal Encephalopathy Syndrome 

Mucolipidosis IV 

Nemaline Myopathy Type 2 

Niemann Pick Disease Type A&B 

Polycystic Kidney Disease 

Pontocerebellar Hypoplasia Type 1A 

Pontocerebellar Hypoplasia Type 2D 

Pontocerebellar Hypoplasia Type 2E 

Roberts Syndrome 

Severe Methylenetetrahydrofolate Reductase Deficiency 

SLC1A4 Deficiency 

Smith Lemli Opitz Syndrome  spinal Muscular Atrophy 

Tay Sachs Disease 

Total Color Blindness - Achromatopsia (CNGA3) 

Total Color Blindness - Achromatopsia (CNGB3) 

Ullrich Congenital Muscular Dystrophy 1 

Vici Syndrome 

Walker Warburg Syndrome 

Warsaw Breakage Syndrome 

Wolman Disease 

Hearing Loss panel 

Autosomal Recessive Deafness 1B - Connexin 26, 

Autosomal Recessive Deafness 1B -Connexin 30 

Autosomal Recessive Deafness 77 

Hearing Loss MPZL2 

Hearing Loss MYO15A 

Hearing Loss OTOFERLIN, Hearing Loss OTOG,  

Hearing Loss OTOGL, Hearing Loss PEX26 

Hearing Loss SPATA5L1 * 

Hearing loss STRC * 

Hearing Loss TMC1 

Hearing Loss TMPRSS3 

Pendred Syndrome 

Perrault syndrome 4 * 

Usher Syndrome Type 1F 

Usher Syndrome Type 1B 

Usher Syndrome Type 1C 

Usher Syndrome Type 1G 

Usher Syndrome Type 2A 

Usher Syndrome Type 2C 

Usher Syndrome Type 3A 

Advanced Panel 

This panel offers screening for 50 mild and/or newly discovered genetic diseases. 

Please call our office at 001 718-384-6060. 

Step 1 - Paperwork and Payment 

You’ll need to know your date of birth, ancestry (Ashkenazi, Sephardi, Convert or Non-Jewish origin), maternal and paternal grandparents’ country of origin and a phone number to be kept on file.

Step 2 - Get a Number 

You receive a Dor Yeshorim ID number. DO NOT LOSE IT!! This number will be used to check compatibility. We recommend you record the number for safekeeping. No names are recorded to ensure complete confidentiality. 

Step 3- Laboratory Testing 

Trained phlebotomists take a small blood sample. Samples are then sent to the lab for testing .Results are entered into a database under multi-tiered, rigorous quality controls.

Checking compatibility

Option 1: Both parties call Dor Yeshorim’s 24-hour hotline at 718-384-6060.

Option 2: Visit https://doryeshorim.com/check-compatibility/ to submit a request via an online form.

You will be prompted to enter the boy’s and the girl’s 9-digit Dor Yeshorim ID number along with the day and month of birth (the year is not necessary) as well as a phone number where you can be reached. Please note that a response regarding compatibility will only be given upon calling a phone number that is registered on file.

One of our trained representatives will call the number on file with the results, within a few business hours. To maintain confidentiality and privacy, you must answer the phone in person to receive the results. Results are never released to a third party, such as a shadchan. If you miss the call, you will be asked to call the hotline again and re-enter the information to receive a call back. When we return your call, you will once again be asked for the ID# and date of birth of both parties, so please make sure to have them handy.

Reference- https://doryeshorim.org/

Jnetics aims to increase awareness and understanding of JGDs among healthcare professionals, affected families, patient groups, and the Jewish and wider community. 

Services

-Education and awareness raising about recessive JGDs and BRCA-associated cancers to students, young professionals, community leaders, healthcare professionals and the wider community 

-Provision of carrier screening, in conjunction with the NHS, for severe recessive JGDs via our Jnetics Clinic, Jnetics on Campus, and Jnetics at School programmes 

-Signposting to the best available NHS and private services offering testing for the BRCA gene mutations 

-Provide extensive information about both recessive and dominant genetic disorders via our website 

-Signpost individuals, either those at risk or affected by Jewish genetic disorders, to a range of information and support resources 

They offer carrier screening for the most severe recessive JGDs to young adults who have at least one Jewish grandparent via the following three services: 

Jnetics in Schools - this is currently a free service

Jnetics on Campus – this is currently a free service

The Jnetics Clinic- The clinic is designed for couples to screen together, however we will accept those wishing to screen individually. 

This is a no-contact service with pre- and post-test support delivered virtually.  

The clinic runs three times a month: 

1st Thursday Of The Month: 08:30-10:30 | 11:30-13:30 | 14:00-16:30 

3rd Wednesday Of The Month: 17:00-20:00 

3rd Thursday Of The Month: 11:30-13:30 | 14:00-18:30 

The price is £250 for an individual and £350 for a couple 

Testing

Schools- Jnetics tests sixth form students for free (fully subsidised by Jnetics through fundraising and the generosity of the community) in all eight mainstream Jewish secondary schools in the UK.

Yavneh College, Immanuel College, Hasmonean Girls, Hasmonean Boys, JFS, JCoSS, King Solomon, King David (Manchester).

Jnetics visit all the schools each academic year and provide an informative educational assembly to Year 12 and 13 about Jewish genetic disorders and their risk. After the assembly students have the opportunity to register and book their carrier screening test. Jnetics return to school the following week with a group of trained volunteers who advise the students how to do the saliva swab sample. Jnetics then send the samples to the lab and students can expect to receive their results by email in up to 20 weeks’ time.

Clinic- The Jnetics Clinic operates virtually via video call. Book your appointment by choosing your appointment time and date on https://www.jnetics.org/clinic/book-a-test/ and proceed to complete the registration form. They will then send a screening pack to you in the post (including a saliva sample kit). The genetic counsellor will send you a ZOOM link in advance of the appointment. During the call she will give you instructions about providing your sample and posting it back to us/the lab.

Campus- University Screening Week (USW) is a virtual programme where students can sign up and book an appointment to get tested for free (fully subsidised by Jnetics through fundraising and the generosity of the community) whilst at university. It is usually held in November. Booking has now closed for 2022, please register your interest for November 2023 on the website.

Jnetics on Campus University Screening Week is taking place in November 2023. The booking form will not open until October 2023.

Once a student signs-up, they will receive a swab pack in the post with everything they need to complete the test. During USW, students meet with a trained Screening Advisor volunteer on a Zoom appointment who will advise the student how to do the sample.

After the appointment, students are advised to post back the saliva swab to Jnetics who sends the samples to the lab. Students can expect to see results within 20 weeks’ time.

Students are required to provide their university ID. Please note, if you have already been screened through University Screening Week in a previous year or at school for 9 disorders, you are not eligible to retest through University Screening Week this year but you are welcome to sign up to The Jnetics Clinic where you can retest for the 47 disorders.

You will have the opportunity to discuss your results with a dedicated NHS Jnetics genetic counsellor. The implications of being a carrier are only significant if your current or future partner is also a carrier of the same condition. In this situation it will be possible to make an appointment with a genetic counsellor to discuss the different options available to reduce the risk of having an affected child.

Panel of screening Jnetics 

ABCC8-related Hyperinsulinism 

Asparagine Synthetase Deficiency 

Acute Infantile Liver Failure 

Bardet-Biedl Syndrome 

Bloom Syndrome~ 

Canavan Disease~ 

Carnitine Palmitoyltransferase II Deficiency 

Congenital Amegakaryocytic Thrombocytopenia 

Congenital Disorder of Glycosylation Ia 

Costeff Optic Atrophy Syndrome 

Cystic Fibrosis~ 

Cystinosis 

Dihydrolipamide Dehydrogenase Deficiency 

Familial Dysautonomia~ 

Fanconi Anaemia C~ 

Fanconi Anemia, Complementation group A 

Fumarase Deficiency 

Galactosemia 

Glycogen Storage Disease 1a~ 

Glycogen Storage Disease Type II/Pompe Disease 

Glycogen Storage Disease Type III 

Glycogen Storage Disease Type VII 

Infantile Cerebral Cerebellar Atrophy 

Joubert Syndrome 2 

Maple Syrup Urine Disease type 1B 

Megalencephalic Leukoencephalopathy with subcortical cysts 

Metachromatic Leukodystrophy 

Mitochondrial Complex I Deficiency 

Mucolipidosis IV~ 

Nemaline Myopathy 2 

Niemann Pick Disease (Type A) ~ 

Omenn Syndrome 

Polycystic Kidney Disease, Autosomal Recessive 

Primary Ciliary Dyskinesia 

Progressive Cerebello-Cerebral Atrophy 1 

Progressive Cerebello-Cerebreal Atrophy 2 

Smith-Lemli-Opitz Syndrome 

Spinal Muscular Atrophy 

Tay Sachs Disease~ 

Tryosinemia Type 1 

Usher Syndrome Type IIIA 

Usher Syndrome Type 2 

Usher Syndrome Type IF 

Walker-Warburg Syndrome 

Wolman Disease/Cholesteryl Ester Storage Disease 

Zellweger Syndrome Spectrum (PEX6 related) 

Zellweger Syndrome Spectrum (PEX2 related) 

Fragile X Syndrome *** 

Key

*exact carrier frequency unknown but condition described in some Jewish families from named population 

**disorder is severe and often included in Jewish carrier tests but carrier data is sparse. 

***a variable and complex X-linked recessive disorder – opt in available for women participating in The Jnetics Clinic. 

~disorder was covered in Jnetics test prior to launch of new test in September 2021 

Reference- https://www.jnetics.org/

Pre-implantation genetic testing can be used by people who have a serious inherited disease in their family to avoid passing it onto their children. This section explains how the treatment works and which conditions you can check for.

PGT-A

What is PGT-A?

PGT-A (previously known as preimplantation genetic screening or PGS) is a treatment add-on. It involves checking embryos created by in vitro fertilisation (IVF) or intracytoplasmic sperm injection (ICSI) for abnormalities in the number of chromosomes. PGT-A doesn’t check for specific genetic diagnoses.

During PGT-A, a single cell or a small number of cells is removed from the embryo. The DNA of these cells is then tested to see whether they have any chromosomal abnormalities. Only embryos without chromosomal abnormalities are placed back in the womb.

Who might be recommended to have PGT-A?

Older women are more likely to have eggs with the wrong number of chromosomes, so traditionally it’s been offered to women over 37. Abnormal chromosomes are thought to be the main reason why older women have difficulties conceiving and are more likely to have a miscarriage or a baby with Down’s Syndrome.

Your doctor may also recommend PGT-A if you have a family history of chromosomal problems, if your sperm is at risk of carrying abnormal chromosomes, or if you’ve had several miscarriages or failed IVF attempts without explanation.

However, there is limited evidence to show that PGT-A benefits these groups (see more below). It’s also not a guaranteed way to prevent miscarriage or to have a baby.

What causes abnormal chromosomes?

When the cells of eggs, sperm and embryos divide this can lead to too many, or too few, chromosomes, or with missing or added pieces of DNA. Abnormal chromosomes happen very frequently during the normal production of eggs, sperm and during embryo development.

Does PGT-A work?

PGT-A is traditionally offered to women over 37 with a history of miscarriage or failed IVF cycles or people with a family history of chromosome problems. However, to date there is little evidence showing it improves the chances of having a baby for most fertility patients and therefore it is considered a treatment add-on.

Until larger trials have been run and we have more evidence, there’s no guarantee that PGT-A can improve your chances of a successful pregnancy.

How safe is it for the embryos?

PGT-A involves taking a biopsy, to remove a cell or number of cells, from an embryo which can sometimes cause damage to the embryo and prevent it from developing once it has been transferred into the womb.

Are there any other risks?

PGT-A carries the same risks as IVF. However, PGT-A also has some treatment-specific risks. This includes the possibility of a misdiagnosis (eg due to mosaicism described above). There is also the risk that, if all the embryos are found to have abnormal chromosomes, there won’t be any embryos to put back in the womb. This is especially likely for older women.

Can I have PGT-A on the NHS?

No, PGT-A is not currently funded by the NHS. PGT-A can be expensive so you should talk to your clinic about likely costs and make sure your clinician clearly explains why PGT-A might be appropriate for you.

PTT-

PTT is a type of embryo testing which can be used in the treatment of children with life-limiting blood disorders such as beta thalassaemia, Fanconi’s anaemia and Diamond Blackfan anaemia.

The best available treatment for children with these illnesses usually involves a transfusion of stem cells from a tissue-matched donor, ideally a close relative. Where a close relative isn’t available, parents can choose to have another child and use PTT treatment to only select embryos that are an exact tissue match to their older sibling. It’s for this reason that PTT is sometimes referred to as ‘saviour siblings’ technology.

You should talk to your child’s doctor about whether PTT is appropriate for you. It may be suggested as an option if:

• your child has a life-limiting blood disorder that can only be treated through a donation from a tissue-matched donor

• there are no tissue-matched donors available in your family and your doctor has confirmed that an unrelated donation from a tissue bank would not be suitable

• the condition your child suffers from is genetic and you want to ensure any future children you have do not inherit the condition.

PTT is very similar to another type of embryo testing called pre-implantation genetic testing for monogenic disorders (PGT-M) (previously known as pre-implantation genetic diagnosis PGD). The main difference is that in PGT-M you’re testing embryos for genetic diseases (so you can choose one that doesn’t have the disease) whereas in PTT you’re selecting embryos that are a tissue match.

In many cases, the condition the existing child suffers from is heritable, meaning it can be passed from generation to generation. In these cases, parents can use PTT with PGT-M, to ensure they have a child who is no

What if my child’s condition hasn’t been approved for PTT?

If there’s a condition you’d like to be able to test for that hasn’t already been approved, your clinic will need to apply to us to add it to the PTT list. There are strict criteria for deciding which conditions can be permitted so bear in mind it could be a lengthy process and you may not be successful.

If a condition has already been approved for PGT-M testing or PGT-M with PTT (but not for PTT on its own), your application will be considered as quickly as possible.

How safe is PTT?

So far, the evidence we have shows that PTT is safe for both mother and baby. However, it’s performed so rarely in comparison to other treatments we have much less evidence on the risks.

There are risks associated with IVF, and no treatment has a 100% success rate. For example, successfully giving birth to a child who is a tissue-match for a sibling, unfortunately does not guarantee that a transfusion will be successful. Also, some embryos may be damaged by the process, which means they would need to be discarded. It is important to discuss all the potential risks with your specialist before treatment.

How can I get PTT treatment?

The first step should be talking to your GP or specialist. It may be possible to have treatment on the NHS but it will depend on what’s offered by your local clinical commissioning group (the body responsible for providing NHS services in your area).

Only very specialist clinics provide PTT. You’ll need to first find a clinic that offers pre-implantation genetic diagnosis (PGT-M) and contact them to see if they also offer PTT.

How successful is PTT?

As with all fertility treatments, the woman’s age has a big impact on her chances of having a baby.

The measure of success for PTT will not only be the birth of a baby free from the condition, but also whether a donation of stem cells from that baby successfully treats the older sibling. Unfortunately this treatment is performed so rarely we simply don’t have enough data to provide reliable figures on this. We strongly recommend you talk to your child’s doctor about your personal chances of success. Are there any support groups I can talk to?

PGT-M

What is PGT-M?

PGT-M, previously known as preimplantation genetic diagnosis (PGD), is a treatment which involves checking the genes or chromosomes of your embryos for a specific genetic condition.

Because the embryos need to be tested in a lab, you will need to have IVF, even if you and your partner have no fertility problems.

Embryos which have been tested and are free of the condition will be placed back into your womb to hopefully continue to develop. Historically, the embryo was usually transferred two to six days after being created (ie, a fresh embryo transfer) but now, the embryo is more often frozen and transferred at a later date.

What is PGT-SR?

PGT-SR is a treatment that involves looking at the chromosome structure of your embryos, and finding where segments may have been deleted, duplicated or inverted. It can be used for people with a known chromosome structural rearrangement, to improve the chance of a healthy pregnancy.

Who can have PGT-M or PGT-SR?

Your doctor may discuss PGT-M or PGT-SR with you if:

• you have ended previous pregnancies because of a serious genetic condition

• you already have a child with a serious genetic condition and want to avoid this happening again

• you have a family history of a serious genetic condition

• you have a family history of chromosome problems or

• you have a history of recurrent miscarriage due to chromosomal abnormalities

Which genetic conditions can be tested for with PGT-M?

It is possible to use PGT-M to test for almost any genetic condition where a specific gene is known to cause that condition. However conditions can only be tested for when the condition has been considered by the Authority to comply with legal criteria related to the risk of transmission and the seriousness of symptoms, in somebody affected by the genetic abnormality to be tested for.

Which genetic conditions can be tested for with PGT-SR?

Chromosomal rearrangements such as duplications, deletions and inversions, can disrupt embryo development to the extent that a pregnancy is lost or a baby is born with significant developmental defects. The Authority has approved ‘Chromosomal rearrangements (various)’ as a condition for which embryo testing can be applied, if a case complies with legal criteria related to the risk of transmission and the seriousness of symptoms in somebody affected by the genetic abnormality to be tested for.

Therefore in those at risk of transmitting a chromosomal abnormality which can cause repetitive pregnancy failure or developmental defects, PGT-SR can be used to achieve a success pregnancy.

What if I have a genetic condition that hasn't been approved for testing?

If there’s a genetic condition you’d like to be able to test for that hasn’t already been approved, your clinic will need to apply to the HFEA to add it to the PGT-M list.

There are strict criteria for deciding which conditions should be permitted so bear in mind it could be a lengthy process and you may not be successful.

How safe is PGT-M and PGT-SR?

PGT-M and PGT-SR treatment is thought to be very safe – there is no evidence that babies born following such treatments suffer from any more health or developmental problems than babies born using IVF alone. However, there are certain risks associated with IVF.

Although an embryo can usually develop normally even when it has had some cells removed, there is a possibility that some embryos may be damaged by testing, which means they would need to be discarded and wouldn’t be able to be used in IVF treatment. In addition, PGT-M and PGT-SR are not 100% accurate so there’s a small chance the tests may not work or may give the wrong information.

What is the chance of having a baby?

As with most fertility treatments, success depends on many factors, including the woman’s age and whether there are any existing fertility problems.

While numbers of treatments being carried out are still low, PGT-M and PGT-SR embryo testing has become more popular.

Why might PGT-M and PGT-SR be unsuccessful?

Unfortunately, sometimes there are no embryos suitable for transfer to the womb. This could be because:

• not enough eggs are produced or fertilised in the first place

• there is a small risk that removing the cells for analysis damages an embryo

• all the embryos are affected by the genetic abnormality

How can I get PGT-M or PGT-SR treatment?

Your first step should be to talk to your GP, who will refer you to a Regional Clinical Genetics Service for further advice about all your options.

In some cases, you can get PGT-M or PGT-SR treatment on the NHS but it depends on your situation and where you live – your GP should be able to advise you.

If it’s been agreed that PGT-M or PGT-SR is the right treatment for you, you’ll be referred to a specialist at a fertility clinic that has a licence from the HFEA to carry out embryo testing treatments. This is a specialist service so your nearest clinic may be far away. Please note that PGT-M and PGT-SR are together referred to as PGD on the HFEA Choose a clinic page.

Reference- https://www.hfea.gov.uk/treatments/embryo-testing-and-treatments-for-disease/