Global Genes Rare Advocacy Summit 2023

[Rexz]

Hi all I will be representing, for my second year, Autoimmune Registry, in San Diego, California USA. 19-21 September 2023.

If anyone in USA might be attending DM me and I'd love to meet.

here are the links to Global Genes Rare Advocacy Summit

globalgenes.org/event/rare-...

and Autoimmune Registry. I encourage anyone interested in advancing research on PA or AMAG to register with Autoimmune Registry.

autoimmuneregistry.org/netw...

Best wishes, Rexz

[EllaNore]

That is fantastic Rexz. You have so much to offer. I really feel you make a difference working with the registry like you do. Thank you for doing what you do to help all of us and future PA suffers. If I still lived in California, I would have made the 9 hour drive to meet you and hear you talk. Is there any way for any of us to watch it?

[Rexz in reply to EllaNore]

Hmmmm, not sure. I'll check but seems there should be a way.

[EllaNore in reply to Rexz]

Maybe it will be on YouTube later?

[EllaNore in reply to Rexz]

They have highlights from 2022 on their site.

[EllaNore]

Here is a link to their Youtube page anything that can be watched should be here.

youtube.com/@GlobalGenesPro...

[Rexz in reply to EllaNore]

Yeah, there's a lot of good stuff there but it is only a small part of what goes on.

[Mixteca in reply to Rexz]

Worth organising someone to video your talk methinks

[Rexz in reply to Mixteca]

I'm not quite sure what the format is yet so that should gel over the next week or so. If I might be giving a talk or just answering questions or just sitting there with a smile on my beautiful face! 😂

But I will look into it.

Rexz

[WIZARD6787]

Hey Rexz,

Someone posted a paper here written by geneticists who had identified 8 issues that could "go wrong" with the human body with regards to B12 "processing".

Do you by chance have a link to these 8 issues.

Note: currently treatment is the same for all 8 issues based on the first one discovered.

[Rexz in reply to WIZARD6787]

Wizard6787

I'm not familiar with that paper but I'd be very interested in reading it. I presume the 8 issues are not 8 symptoms but rather 8 genetic type of mutations?

Since I know my AMAG/PA is hereditary I had genetic testing done this past week. The testing is to find any genetic mutation that may predispose me to cancer or autoimmune disease. If they should find something I will share it.

You have my interest peaked...I will search for that paper.

Rexz

[WIZARD6787 in reply to Rexz]

Through the study of the mutations the scientists were able to identify the biochemical processes that were effective. That is my interest not the actual study of the mutations.

I found it ncbi.nlm.nih.gov/pmc/articl...

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I found this other link interesting cloud.trials.science37.com/...

[Rexz]

I skimmed through this and it's a very interesting paper Wizard. I'll have to take some time to digest this.

Thank you so much for sending/posting this.

Rexz

[WIZARD6787]

I am taking it a bit at a time. Might resort to printing it out. 😀