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External Links

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

https://csfleak.info/

 

Spinal CSF Leak Canada

https://www.spinalcsfleakcanada.ca/?fbclid=IwAR1RyYpkaSfq_5vwiJZu03EX_hrSS0Wkc8uAg9X6UZbKX7I5rHtRhGGHcEU

Ehler's Danlos Syndrome (EDS)-Connective Tissue Disorders

EDS Awareness- great website for EDS information

https://www.chronicpainpartners.com/how-to-improve-your-quality-of-life-while-living-with-ehlers-danlos/

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)

https://ncats.nih.gov/

 

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://rareaction.org/

https://rarediseases.org/about/

https://rarediseases.org/get-involved

 

Rare Connect for Arachnoiditis

https://www.rareconnect.org/en/community/arachnoiditis

 

Rare Disorders New Zealand

https://raredisorders.org.nz/

 

Medics 4 Rare Diseases

https://www.m4rd.org/

 

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

https://www.eurordis.org/

 

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

https://raredisorders.org.nz/

 

Vidgis Foundation by Dr. J Peter Warnke

https://www.vigdis-thompson-foundation.org/de/informationen-fuer-betroffene/behandlungsmoeglichkeiten

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