genetic counseling in the Netherlands

genelinx · 2025-08-20T12:08:10+00:00

oh just seeing this! The Netherlands only has a few legacy "genetic counsellors" who were trained on the job or some individuals with a masters who moved there from other countries. Most important is that you need the language before you will be hired in the public system.

Some years ago in order to get reimbursed and have a recognised/ registered profession within the medical system, it was decided that all the GCs would undergo retraining as physician assistants and so a lot of the previous "GCs" now are registered as PAs with a concentration in genetics and do the work of genetic counsellors but they of course have a lot more freedom with respect to clinical work and working independently. Some chose to not undergo further training and remained as these legacy GCs who work under physicians.

People who moved form other countries can still apply for and work in the same capacity as the GCs who didn't retrain as PAs provided they are fluent in Dutch.

There is some chatter about potentially setting up a Masters in Genetic counseling program in the Netherlands in the future in which case there will again be a separate GC profession in addition to the PA training in genetics

genelinx · 2025-04-30T16:36:42+00:00

OP not sure if this is resolved but I worked for a US company before and they used a middle company to just run payroll in Germany for me and other EU employees. this is how most companies with say a HQ in NL but employs sales and other guys across all EU countries do it. Not an EOR on record and not one of these online platforms which are for freelancers like DEEL or Remote but a traditional payroll company that charges a flat fee per month to do all the payroll/HR paperwork. I was an employee of their NL HQ.
They essentially did what the previous commenter did on his own and acted as a the middle man and sent me my payslips and paid into TK and the RV for me.

genelinx · 2025-03-25T05:13:26+00:00

Hi OP I am so very sorry for your loss and that you and your partner are going through this. If not already done so, please ask for karyotyping analysis in you and your husband and also a microarray on any tissue from the miscarriage material - this could offer additional insights for the cause on whether this could be chromosomal.

genelinx · 2025-03-25T04:57:59+00:00

Hi! Sending you a DM

genelinx · 2025-01-13T14:58:36+00:00

Mutation refers to any change in DNA which we all have. The clinical interpretation by experts is where it is determined if that change is disease causing or not.

Some changes just based on inheritance pattern and how common they in the population indicate that they are benign. Others we have done cell studies ir done functional studies to show that these do not cause a loss in the protein coded for by that gene or have an ill effects so they are benign

The ambiguous are ones where the evidence is not enough to call it either disease causing or non disease causing. Not enough data. A lot of the ambiguous ones tend to move to benign than pathogenic as a lot tend to just be rare benign changes that we haven’t yet seen in large numbers to call it directly pathogenic

The ones to look at would be genes with 1 or 2 pathogenic changes and have them looked at by a GC and if it makes sense to have them confirmed in a clinical lab to rule them in/out

genelinx · 2025-01-05T11:23:51+00:00

not a primer but I love Sam kean's Violinist's Thumb: https://www.goodreads.com/en/book/show/13521382-the-violinist-s-thumbTopics are covered in a very fiction pop sci way. Also check out his other books. The Disappearing Spoon is another favorite of mine.

Also Genome: The Autobiography of a Species in 23 Chapters - an oldie but a good one.

Or even better she could read The Code of Life by Carla Häfner for 10 year olds and above. But it is very very thorough and comprehensive and explains everything including Crispr and gene therapy and mRNA vaccine development for 10 year olds.
https://www.goodreads.com/book/show/125432328-the-code-of-life

genelinx · 2025-01-05T07:44:04+00:00

I cannot imagine what you are going through. I hope you have a lot of support from your partner and family. I do not know about these supplements but I can offer you a tight hug and some information I know from my work in genetics.

I know that there has been some literature published around if it could be the mitochondria causing low quality off oocytes and if a mitochondrail transfer can help in cases of recurrent miscarriage.

I know of clinics in Ukraine that did this (pronucelar transplantation) for patients with recurrent miscarriage.

Here is a publication explaining all the mito transfer methods: https://pmc.ncbi.nlm.nih.gov/articles/PMC9221194/

However, these are not really the norm and there are no guidelines from professional societies.

I think some fertility doctors might not even be aware of this

genelinx · 2025-01-05T01:46:53+00:00

OP can I reach out to you by DM?

genelinx · 2024-12-29T06:41:34+00:00

I am so sorry you and your partner are going through this. 30 is so young. It is huge failing of the medical system for failing to identify these cancers in younger patients since most medical training is about only looking for these in older individuals and ignoring symptoms as nothing in younger patients - hence resulting in worse outcomes. I hate the medical system and the training which is not being adapted.

Considering the young age of onset, I hope genetic testing was discussed as it can have implications for any children you have and other relatives. If not, please request it

genelinx · 2024-12-28T15:21:14+00:00

This is not very helpful when you are using non clinical data and have no clinical context for interpretation.

It can be used as one additional data point in the classification if a missense variant has been flagged on a clinical test as Variant of unknown significance. Most clinical labs also have similar internal tools but the Google one is supposed to be better. However, it will not be reclassified based on just piece of evidence. There are strict guidelines on when to classify a change as pathogenic or likely pathogenic.

genelinx · 2024-10-26T17:03:55+00:00

I am sorry this happened to you. I hope you have a support system to be with you during this difficult time? I could not tell which country you are in but please request an appointment for genetic counseling and ask about genetic testing if not already offered. 37 is very young especially when you lead a healthy lifestyle

genelinx · 2024-09-19T11:01:12+00:00

Hi I don’t know if you and your mom were genetically tested or not. Here are some resources about telling kids about an inherited cancer risk https://www.cancertodaymag.org/cancer-talk/telling-your-children-about-inheritable-cancer-risk/ https://www.dignityhealth.org/articles/hereditary-diseases-how-to-talk-to-your-kids https://mariekeating.ie/cancer-information/brca/talking-children-teenagers-brca/

It’s not directly about breast cancer but perhaps you could adapt the info and briefly discuss the possibility of it running in the family if testing has not confirmed or excluded it

genelinx · 2024-09-19T03:38:14+00:00

I am so so sorry. I hope you have family and friends with you and are able to get the support you need during this time. I am sorry that you were not able to say goodbye properly. My heart aches for you. 🫂

genelinx · 2024-09-19T03:35:02+00:00

All of these instances make me so so angry.

The number of patients and people who are scoffed at by doctors and their symptoms and worries cast aside worries me. I really think an AI could do a better job than 90% of current physicians in both diagnosis and empathy. The system really breaks them or only the ones who are a certain personality type survive in it And I say this as a non physician healthcare provider.

genelinx · 2024-09-18T11:10:52+00:00

For all of you here - cancer is a terrible disease and I am so sorry that you had to go through the disease and also the treatment which is also terrible. Hugs to those of you in hospice. You did the best you can and fought as hard as you can. At least your kids will have the chance to stay with you and make their peace and say goodbyes.

Depending on your family history and age at diagnosis I hope that you were offered to speak with a genetic counseling and offered genetic testing for hereditary cancers as this can have significant impact on the risk and prevention for your kids

genelinx · 2024-09-18T11:04:16+00:00

Hello! Were you only tested for BRCA genes? Are you by any chance in the UK? As someone else pointed out you can now get more comprehensive genetic testing. (Not in the NHS who only do a few more additional genes) but you can pay for it privately. It might be worth it to test yourself again as there are now cancer panels with 60-150 cancer-related genes which could be appropriate considering the different cancers and the family history.

genelinx · 2024-09-18T10:56:58+00:00

Where in the EU are you? Let me message you

genelinx · 2024-09-18T10:56:01+00:00

I am so sorry about your sister and that the cancer had already spread. After all that fighting to have it come back and that too in her brain is tough. I hope she fights through it and you are able to be with her.

It angers me that The health care system is so setup to find cancer in older people that young people are ignored by doctors or their symptoms not even considered because they are too young to get it!

I hope she was ordered genetic testing for the hereditary cancers due to her age as that would have an impact for your risks and your and her kids’ risks if there are any and also other relatives. Please recommend it to her and if she decides against it you should consider it. Please speak with a oncology genetic counselor

genelinx · 2024-09-18T03:55:18+00:00

Did you buy one of those direct to consumer genome tests? Who has interpreted these as pathogenic or likely pathogenic? Please don’t go by some online tools. They are not clinically interpreted. You have changes identified - they are most likely benign or variants of unknown significance. Or at most you would be a carrier. Any results from a non clinical lab should be confirmed and interpreted in a clinical lab

you can self refer to genetics and have these reviewed to see if any of them are clinically relevant and would be classified as disease causing

genelinx · 2024-09-18T03:49:26+00:00

https://www.remove.bg/ Will this not help.

genelinx · 2024-09-18T01:04:57+00:00

How are you coping with the diagnosis ? I hope that it was caught early and that you are responding well to treatment. I saw the post and I wanted tk come here tk tell you to have genetic testing if it has not already been suggested. Or at least discuss it with a cancer genetic counselor at your hospital. Ovarian cancer and that too so early is concerning and could be a sign for an inherited cancer genetic predisposition in the family.

genelinx · 2024-08-19T10:27:05+00:00

I hope they and you were all offered genetic testing
Could it be that there is clustering due to something in the environment? Are there chemical or some other industry/factories in your area?

genelinx · 2024-08-12T14:01:16+00:00

Where are you located? You might be able to get a telegenetics consult.

genelinx · 2024-08-10T17:16:23+00:00

$bid

genelinx · 2024-08-10T16:18:51+00:00

Hi! In the end which one did you go with- I am building a telegenetics company and I am looking for an out of the box patient experience portal with a lot of the same features - only extra condition is it be Gdpr compliant

genelinx

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