Website creation

EXTERNAL LINKS

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ARTICLES & RESOURCES

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ARACHNOIDITIS

  • Diagnosing Arachnoiditis- Arachnoiditis Hope

https://arachnoiditishope.com/diagnosis/

  • Arachnoiditis Hope- Bulletins

https://arachnoiditishope.com/protocols/

  • How to Get Disability Benefits for Spinal Arachnoiditis

How to Get Disability Benefits for Spinal Arachnoiditis | DisabilitySecrets

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CSF

  • Spinal CSF Leak

https://spinalcsfleak.org/about-us/

  • CSF Leak Association

https://csfleak.info/

  • Spinal CSF Leak Canada

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

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EDS-Conntective 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/

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MISC.

  • How to get Disability Benefits for Spinal Arachnoiditis

https://www.disabilitysecrets.com/resources/how-to-get-disability-benefits-spinal-problems.htm

  • How social media can help rare disease patients

https://www.raconteur.net/social-media/building-connections-how-social-media-can-help-rare-disease-patients/?fbclid=IwAR101RVT6xlu7w28pOrIXIvCNNUGl0XEJr8ceCedExAwAgQnWkC3DG4lG9Y

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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/

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MISC RESOURCES

  • 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