Sources
& social media
International websites
Must read: https://bestfoot4wardblog.com/2020/02/20/hnpp-the-latest
NHS: www.nhs.uk/conditions/hereditary-neuropathy
HNF: www.hnf-cure.org
www.hnf-cure.org/registry/: Global Registry for Inherited Neuropathies (GRIN)
Orphanet: www.orpha.net
https://rarediseases.org/
Associations
CMTA USA: www.cmtausa.org
CMT France: www.cmt-france.org
ECMT: European CMT Federation: https://ecmtf.org
Hereditary Neuropathy Foundation: www.hnf-cure.org
Patient websites
https://hnppwellbeing.com/
https://hnpp.org (unfortunately doesn't exist anymore.)
National websites
The Netherlands: www.spierziekten.nl/overzicht/erfelijke-drukneuropathie
Please contact me to add other national websites!
HNPP on social media
FACEBOOK
International
HNPP, CMT AND HMSN SUPPORT: www.facebook.com/groups/1455867171380344
HNPP Global- Knowledge & Support: www.facebook.com/groups/248773409169888
HNPP HELP: www.facebook.com/groups/hnpphelp
HNPP-WORLD: www.facebook.com/groups/1713758632178693
Demyelinating (CMT1/CMT4/HNPP): www.facebook.com/groups/12765525026/subgroups/628210788796734
Hereditary Neuropathy & CMT: www.facebook.com/groups/77586634334
Local
France
Neuropathie Tomaculaire - HNPP: Soutien & Information FR: www.facebook.com/groups/612757442695510
Belgium/Netherlands
HNPP BE/NL (België/Belgique - Nederland): www.facebook.com/groups/hnppbenl
StuffThatWorks
StuffThatworks.health helps people learn which treatments work best for their condition. Patients fill in a questionnaire which leads to several insights into the condition (see pictures below). You can add your profile through this link https://stuff.health/s/flwTqQp0
Fill in the questionnaire to have access to the specific information. Even if you haven't tried treatments you are able to fill in the questions (symptoms, etc ...). It isn't necessary to fill in your name, you can add an alias!
Right now our community has 400 contributors. When we reach 500 contributors, we get automatically new insights, which is 'Most effective treatments'.