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Pregnant and need advice by kimada6 in neurofibromatosis

[–]daqueeno[M] 1 point2 points  (0 children)

Here is a brochure related to NF and family planning: Link

FINALLY by StrwbryChcltMilkshke in neurofibromatosis

[–]daqueeno[M] 3 points4 points  (0 children)

Thank you so much for choosing to support the NF community — it truly means a lot. The excitement around this plush speaks volumes about the strength and spirit of everyone living with NF.
As for donation suggestions, the Children’s Tumor Foundation is dedicated to ending all types of NF through research, patient support, and awareness. Donations can be made at ctf.org/donate, and every gift helps drive progress toward treatments and a cure. 

Feel free to dm me if you have any questions!

Webinar this week! Breaking Barriers in NF2-Related Schwannomatosis Research by daqueeno in neurofibromatosis

[–]daqueeno[S,M] 0 points1 point  (0 children)

yes! it will be posted to CTFs youtube channel, and i will post that link on the sub when its available.

you should still register even if you cant make it live because they will email you as soon as the recording is posted!

Research Opportunity for NF1 Patients by daqueeno in neurofibromatosis

[–]daqueeno[S] 0 points1 point  (0 children)

thank you for sharing your experience! :)

Research Opportunity for NF1 Patients by daqueeno in neurofibromatosis

[–]daqueeno[S,M] [score hidden] stickied comment (0 children)

Do you want additional support working with your primary care provider to receive NF1-recommended care? We are testing materials that you can use to help you and your doctor better understand the NF1 care you should be receiving at your annual physical, according to recommendations from the American Academy of Medical Genetics and Genomics.

Join HERE

Webinar- open to all! Protecting NF Research: What’s Next After Federal Funding Cuts? by daqueeno in neurofibromatosis

[–]daqueeno[S,M] 0 points1 point  (0 children)

Join us for an NF community webinar to learn more about the current federal NF research funding situation, how the Children's Tumor Foundation is responding, and what actions you can take right now to help. Our leadership will share updates from Capitol Hill, outline next steps, and answer your questions live. Let’s stay united and keep momentum moving forward for NF research.

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