jueves, 23 de abril de 2015

Neurofibromatosis type 2 and Schwannomatosis (NF2), the Community - RareConnect

Neurofibromatosis type 2 and Schwannomatosis (NF2), the Community - RareConnect

RareConnect

RARECONNECT
Online Communities for Rare Disease Patients
Join the newest RareConnect community for neurofibromatosis type 2, a tumor-prone disorder

Neurofibromatosis type 2 and Schwannomatosis (NF2) Community

Learn how others live with Neurofibromatosis type 2 and Schwannomatosis (NF2) and share your story

Neurofibromatosis Camp

by Children's Tumor Foundation published 9 days ago

CTF's camp for children with NF. please visit our website at www.ctf.org for more information about the camp.
NF children - how it began

NF children - how it began

by claas published 14 days ago
The charitable association NF Kinder was founded in Vienna/Austria in late 2013 to support people of all ages suffering from neurofibromatosis and to create the necessary medical infrastructure to facilitate the preconditions for sustainable research in Austria. Hello, dear NF community
My name is Claas Röhl. I'm pleased to welcome you here to the RareConnect NF group. This group emer...
Uwe and his NF2

Uwe and his NF2

by RareConnect team published about 1 month ago
In the winter time, I often only noticed that something was not right with me functionally. From childhood on I had trouble grasping things with the right hand as soon as the temperatures dropped. Of course, that was an obstacle for winter sports, for example, which I enjoyed, and so I asked friends to retie the laces on my shoes. Despite of this disability, I did not switch to left hand and le...

Angela Maria

by RareConnect team published about 1 month ago
My name is Angela Maria and I'm from Rome. I am a doctor, I am surrounded by friends who are doctors and by colleagues. Only one among them arose the doubt ''maybe there's something wrong with your hearing, sometimes you ask to repeat what you are told”. I underwent an audiometry as carefree as someone going to the pub, but they found a unilateral deficit that needed to be...

Lisa and Neurofibromatosis type 2

by RareConnect team published about 1 month ago
My name is Lisa and I live in Salerno, Italy. The NF2 diagnosis exploded like a bomb in 1993 when I was only 20. My hearing was just a little poor. At the beginning the ORLs from my town didn't understand and kept prescribing audiometries, then a CT scan finally revealed the presence of neuromas. I was saved by a doctor from Naples, skilled and understanding, specialized in audiology, who ...

Hugh's Story of living with NF2

by British Columbia Neurofibromatosis Foundation (BCNF) published 2 months ago

Hugh is an adult sharing his experiences and insights of his life with NF2. Hugh talks of how he copes and continues to live life to the fullest despite profound deafness and other challenges. Brought to you by the BC Neurofibromatosis Foundation (BCNF). Watch more videos from the BCNF. 


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