CNCF: Children’s Neuroblastoma Cancer Foundation
The CNCF organisation has advocate for Neuroblastoma and run a yearly conference for parents. Be sure to check out the Neuroblastoma Parent’s Handbook and past CNCF conference videos.
Solving Kid’s Cancer
SKC is an nonprofit organisation focused on funding promising research in the area of paediatric cancer. @ludwinski the director of research is a member of our community.
SKC run a yearly parent’s conference: http://solvingkidscancer.org.uk/parent-conference-2016/
There are videos of past conference talks online. 2015, 2014, 2013, 2012
ANR: Advances in Neuroblastoma
ANR is a 2 yearly conference covering advances in Neuroblastoma. Though primarily a conference for NB oncologists and researchers. It has a parent’s day. 2018 is planned to be in San Francisco.
In 2016 all the parent’s day sessions were recorded and are available online.
###ACOR: N-BLAST mailing list
The ACOR mailing list is a treasure trove of old Neuroblastoma related information. It was started 20 years ago and as a support forum similar to this site.
Facebook: Neuroblastoma Support group . You are Not Alone Ask Away.
The Facebook group is managed by Tiffany Seibel-Howard and contains very regular updates and discussions related to NB.
Facebook: Neuroblastoma Family Support Group
The Facebook group is managed by @MonicaFaucheux and contains very regular updates and discussions related to NB.
The INBRACED site contains technical article links related to research news
Kids’ Cancer Research Foundation
A charity run by @2525 focused around research and financial support. Be sure to check out the
“Steps of Hope” guide to help find the best possible cancer care.
NOTE: This topic is a wiki, feel free to edit it if you would like to add links etc.
If you are unsure about your edit just post a reply here.
For French speaking people…
Facebook group les enfants atteints d un neuroblastome cancer de l' enfant | Facebook
Email list neuroblastome - Neuroblastome - info
(once registered every mail sent to the list is received by everyone so they can answer)
I found a lot of information and support from both.
Sophie, feel free to edit that into the first post
Feel free to include some text in French as well if you wish describing it, it will help Google find it.
Providing information and peer support to neuroblastoma families in Canada and around the world. http://www.neuroblastoma.ca