ARTICLES & RESOURCES
ARACHNOIDITIS
Adhesive Arachnoiditis: No Longer a Rare Disease
Adhesive Arachnoiditis: A Clinical Update (practicalpainmanagement.com)
First patient and public involved systematic review of arachnoiditis (chronic meningitis)
The leptomeninges as a critical organ for normal CNS developme\nt and function
Diagnosing Arachnoiditis- Arachnoiditis Hope
https://arachnoiditishope.com/diagnosis/
Arachnoiditis Hope- Bulletins
https://arachnoiditishope.com/protocols/
How to Get Social Security Disability Benefits for Spinal Arachnoiditis-SSDI
How to Get Disability Benefits for Spinal Arachnoiditis | DisabilitySecrets
CSF
Spinal CSF Leak-Spinal fluid leak
https://spinalcsfleak.org/about-us/
CSF Leak Association
Spinal CSF Leak Canada
Ehler's Danlos Syndrome (EDS)-Connective Tissue Disorders
EDS Awareness- great website for EDS information
TARLOV /ARACHNOIDITIS CYSTS
Tarlov Cyst Foundation
https://www.tarlovcystfoundation.org/
Tarlov Cyst Society Europe
https://www.facebook.com/groups/tarlovcysteurope/?ref=share
Vigdis Thompson Foundation
Dr. J. Peter Warnke (Tarlov Cyst & Arachnoiditis)
https://www.vigdis-thompson-foundation.org/de/
MISC RESOURCES
How to get Social Security Disability Benefits for Spinal Arachnoiditis
https://www.disabilitysecrets.com/resources/how-to-get-disability-benefits-spinal-problems.htm
Disease Info Search
https://www.diseaseinfosearch.org/search?term=arachnoiditis
National Center for Advancing Translational Sciences (NCATS)
NIH (National Institutes for Health)
https://rarediseases.info.nih.gov/diseases/5839/arachnoiditis
Rare Disease Networks
GARD-Genetic and Rare Disease Network
https://rarediseases.info.nih.gov/diseases/5839/spinal-arachnoiditis
For Patients Families and Friends:
https://rarediseases.info.nih.gov/guides/pages/96/patients-families-and-friends
Healthcare Professionals:
https://rarediseases.info.nih.gov/guides/pages/97/healthcare-professionals
Researchers:
https://rarediseases.info.nih.gov/guides/pages/98/researchers
Teachers and Students:
https://rarediseases.info.nih.gov/guides/pages/99/teachers-and-students
Global Genes
https://globalgenes.org/disease/arachnoiditis/
NORD
https://rarediseases.org/about/
https://rarediseases.org/get-involved
Rare Connect for Arachnoiditis
https://www.rareconnect.org/en/community/arachnoiditis
Rare Disorders New Zealand
Medics 4 Rare Diseases
Chan Zuckerberg Rare as One
https://chanzuckerberg.com/science/programs-resources/rare-as-one/
Global Resources & International Serving Groups
Beacon Findacure
Primary Beneficiaries are Patient Groups
https://www.rarebeacon.org/rare-diseases/why-patient-groups-matter/
Canadian Organization for Rare Disorders
http://www.raredisorders.ca/cord-membership/our-members/
EURORDIS Rare Disease Europe
Orphanet EU Rare Disease Resource
The portal for rare diseases and orphan drugs
https://www.orpha.net/consor/cgi-bin/Disease_Search_Simple.php?lng=EN&diseaseGroup=Arachnoiditis
PARACELSUS-KLINIK ZWICKAU
https://www.paracelsus-kliniken.de/akut/zwickau/fachbereiche/neurochirurgie/
Rare Connect Arachnoiditis Group
Connecting Rare Disease Patients Globally
https://www.rareconnect.org/en/community/arachnoiditis
Rare Disorders New Zealand
Vidgis Foundation by Dr. J Peter Warnke