Online Resources for Neuroblastoma Parents


(Sam Saffron) #1

###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.

http://www.cncfhope.org/


###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.

http://www.acor.org/listservs/join/


###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.

https://www.facebook.com/groups/neuroblastomahelp/


###Facebook: Neuroblastoma Family Support Group

The Facebook group is managed by @MonicaFaucheux and contains very regular updates and discussions related to NB.

https://www.facebook.com/groups/109654430257/


###INBRACED

The INBRACED site contains technical article links related to research news

http://www.inbraced.org/

###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.

http://www.endkidscancer.org/


(Sam Saffron) #2

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.


(Sam Saffron) #4

(Sophie) #5

For French speaking people…

Facebook group https://www.facebook.com/groups/juju.neuroblastome/?fref=ts
Email list http://sympa.medicalistes.org/wws/info/neuroblastome
(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.


(Sam Saffron) #6

Sophie, feel free to edit that into the first post :wink:

Feel free to include some text in French as well if you wish describing it, it will help Google find it.


(Antonia Palmer) #7

###Neuroblastoma Canada
Providing information and peer support to neuroblastoma families in Canada and around the world. http://www.neuroblastoma.ca