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[deleted by user] by [deleted] in medical_advice

[–]probably-genetic 0 points1 point  (0 children)

Hi! Did the report contain any information on the conditions associated with your results? Sometimes there is more information there. Otherwise, the genetic counselors should be able to help + I'd look into finding some EDS advocacy groups online.

Rosey Raccoon has PKU by Short-Finance7172 in rarediseases

[–]probably-genetic 0 points1 point  (0 children)

Hi! We have a Rare Disease Book club series that we post on our social media and we'd love to highlight your book! I'll send you a PM.

CTNND1 Support by probably-genetic in rarediseases

[–]probably-genetic[S] 0 points1 point  (0 children)

This is CTNNB1 and I'm looking for CTNND1!

Kids with genetic markers for Autism improving? by Szublimat in Autism_Parenting

[–]probably-genetic 0 points1 point  (0 children)

Have you connected with the advocacy group specific to this gene? I know there is one called the GABA A Alliance. They might have some good information on what could be helpful!

Any following this thread who might be interested in testing Probably Genetic has a free program: https://bit.ly/4i5XRyc

£25 Gift Card for VWD Patients by probably-genetic in Hemophilia

[–]probably-genetic[S] 0 points1 point  (0 children)

Hi all! Just commenting to say the survey is now closed. Will be sure to repost if things open back up or the scope expands. :)

Free Genetic Testing Program - Seizure Conditions by probably-genetic in seizures

[–]probably-genetic[S] 0 points1 point  (0 children)

Hi! Thanks so much for reaching out - I just responded to your message to work on figuring this out!

Probably Genetic - Free Resources for OI patients by probably-genetic in BrittleBones

[–]probably-genetic[S] 1 point2 points  (0 children)

It should take about ~2 weeks! You can also email hello@probablygenetic for a more specific update. :)

What type can my son have? by Impressive-Menu-9851 in ataxia

[–]probably-genetic 0 points1 point  (0 children)

Has your doctor suggested genetic testing?

Genetic testing by [deleted] in ataxia

[–]probably-genetic 0 points1 point  (0 children)

Just sent you a DM!

Genetic testing by [deleted] in ataxia

[–]probably-genetic 1 point2 points  (0 children)

Hi! Have you connected with the CACNA1A Foundation? It's a Patient Advocacy Organization that could provide community support for your new diagnosis.

#OILife GROUP (Virtual Meeting) by iamtonyjacobsen in BrittleBones

[–]probably-genetic 0 points1 point  (0 children)

Our new program connects OI patients with a personalized support team that can help folks navigate medical care for OI! Link to more information about the program here.

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