ARTICLES & RESOURCES
Explore an extensive range of informative articles and valuable resources covering a variety of topics on Arachnoiditis and related conditions. Delve into the latest insights, research updates, and clinical updates about Adhesive Arachnoiditis. Gain access to the first patient and public-involved systematic review of arachnoiditis, shedding light on chronic meningitis. Discover the critical role of the leptomeninges in normal CNS development and function.
Get a comprehensive understanding of diagnosing Arachnoiditis through "Arachnoiditis Hope," where you can find valuable information on diagnosis. For those seeking guidance on obtaining Social Security Disability Benefits for Spinal Arachnoiditis, find expert advice at "DisabilitySecrets."
Extend your exploration to CSF-related topics, including Spinal CSF Leaks. Dive into resources from organizations like "Spinal CSF Leak Association" and "Spinal CSF Leak Canada" to learn more about spinal fluid leak conditions.
Further your understanding of Ehler's Danlos Syndrome (EDS) and Connective Tissue Disorders through "EDS Awareness," a comprehensive website offering valuable information. Explore resources provided by the "Tarlov Cyst Foundation," "Tarlov Cyst Society Europe," and the "Vigdis Thompson Foundation," focusing on Tarlov and Arachnoiditis Cysts.
Access additional resources for healthcare professionals, researchers, teachers, students, patients, families, and friends through organizations like NIH, NORD, Rare Connect, and more. Global resources and international-serving groups such as EURORDIS and Beacon Findacure offer a broader perspective on rare disease networks.
Whether you're a medical professional, researcher, patient, or supporter, these resources aim to empower and inform individuals within the Arachnoiditis community and beyond. Explore these insights to stay informed and engaged in the world of Arachnoiditis research, advocacy, and education.
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
Read about the horrors of Pantopaque aka Myodil
A TOO TOXIC X-RAY DYE USED IN AMERICA AND AUSTRALIA KNOWN AS PANTOPAQUE OR MYODIL
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