Neurofibromatozy strona dr Marka Karwackiego

Dołącz do nas - Stowarzyszenie Neurofibromatozy Polska - Alba Julia Aby zostać członkiem Stowarzyszenia, należy: 1. Wypełnić internetową deklarację lub 2. Pobrać i wypełnić deklarację , a następnie wysłać tradycyjną pocztą na adres wskazany w pobranym dokumencie. 3. Po wysłaniu deklaracji należy opłacić składkę członkowską, której minimalna ...

Today, on World NF1 Breast Cancer Awareness Day, we recognize that women with NF1 are at five times higher risk of developing breast cancer before 50. That’s why early screening can’t wait. Starting mammograms at 30 and adding breast MRI through age 50 can make all the difference.

We stand with our NF partners to raise awareness, support research, and honor everyone impacted by NF1 and breast cancer. Every voice matters, every action counts, and every life is worth protecting.

Learn more at the link in bio or go.ctf.org/breastcancer.

pennysflight
Littlest Tumor Foundation
Neurofibromatosis Midwest
Neurofibromatosis Northeast
Seventeen22 Foundation
Texas Neurofibromatosis Foundation
Childhood Tumour Trust
NF Association of Ireland
The NF Team

https://www.facebook.com/share/1CStvnVifG/

The Time is Now: Philip, a Koselugo Success Story for Neurofibromatosis Type 1 (NF1) Thanks to groundbreaking research funded by our generous donors, there are now FDA-approved treatment options for neurofibromatosis and schwannomatosis, with...

https://www.mp.pl/kurier/364232,rpp-wzmocni-walke-z-pseudomedycyna

RPP wzmocni walkę z pseudomedycyną Z przedstawionej właśnie „Strategii” wynika, że oprócz rozbudowy i wzmacniania funduszy kompensacyjnych, priorytetem ma być „walka z szarlatanami”.

Zapisy na nasze Sympozjum ruszają!
https://neurofibromatozy.pl/sympozjum/

Talking to your child about their NF1 diagnosis can be challenging, and many parents may feel unsure about how to begin. That’s exactly what these new resources are for!

⭐ Talking to Your Child About NF1 is a comprehensive guide that helps caregivers decide what and how to share with their child about their condition. It can be used on its own or together with the children’s resource designed to complement it.

⭐ Super Emerson is a children’s book that introduces NF1 through the story of a young child with the condition. Before sharing it, caregivers should review the content to ensure it feels appropriate for their child. The book features engaging sections like “Sparx Facts” and “More from Moxie,” which provide additional insights and activities for kids.

Both resources are available for free in English, Spanish, and French at go.ctf.org/superemerson. These resources have been created to guide parents and caregivers, drawing on research into how families communicate about genetic conditions, including NF1.

A recording of the launch webinar is also available at this site.

Raising awareness for NF2 related Schwannomatosis is crucial to support those affected and to promote research and better treatments. Here are some ways you can help:

* Participate in Awareness Campaigns:

* Organize Events: Host events such as bake sales, coffee mornings, or charity runs to raise funds and awareness. You can also share information about NF2 on social media to reach a wider audience

* Donate to research to help change the lives of those with NF2

* Educate Others: Share information about NF2 with your community, friends, and family. The more people know about the condition, the more support and understanding there will be.





Reading real life stories about how NF2 affects people help others to understand why we need better treatments. Please help us to make that happen by donating to research, sharing your story & raising awareness.