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WHO
ARE
WE?

ACMCRN is leading the Arachnoiditis community in a collaborative effort in areas of research, education, and advocacy.

OUR MISSION

Furthering Arachnoiditis knowledge through collaborative research and patient education

OUR VISION

ACMCRN leads the collaborative effort in bringing patients, caregivers, doctors and researchers together to work as one team in furthering research and education goals of the Arachnoiditis community. We aim to employ the latest in Rare Disease data sharing/ research tools and  the power of online community engagement to advance our understanding and treatments for Arachnoiditis & Chronic Meningitis.

 

We accomplish this mission by focusing on four strategic areas:

 

Research

 

Our research employs the latest in rare disease research strategies, uses patient centered outcome research as well as partners with global Arachnoiditis experts to further the understanding of  Arachnoiditis and uncover possible new treatments. 

 

We are currently engaged in developing an Arachnoiditis patient registry and the necessary research infrastructure to begin clinical trials and the opportunity for peer-reviewed research.


 

Strategic Collaborations

 

Uniting the community of patients and their families, physicians, researchers, and in future, industry, through online forums, newsletters, Zoom peer support, and collaborative partnerships with affiliated rare disease organizations such as those representing the Tarlov Cyst, CSFleak, and Ehlers-Danlos communities.


 

Awareness & Fundraising

 

While Arachnoiditis appears to be rarely diagnosed we believe that Arachnoiditis is not truly rare. Awareness and education activities are of primary importance to us, hence we are developing educational materials for both patients and their physicians and affiliate with organizations like The Tennant Foundation, Global Gene's Compassion Pairing Program and other similar awareness and education projects. 


 

Patient Engagement

 

Our social media channels are all updated daily with the latest in research and education updates and opportunities, and encourage patient engagement. We have both private and public Facebook groups that are active daily, as well as Instagram, LinkedIn and Twitter. Our future goal is to create a peer support channel through this website by early 2023. 

OUR PARTNERS

We're in this together

 

Working together to shape our world. 

We believe that long-term, impactful partnerships are foremost in achieving our mission. Therefore, we work with and alongside others to shape the world for difference — We can’t do it alone. Partnering with others who share our mission and are on our journey will lead to even greater impact.

AND RESOURCES

Tennant Foundation
Stuff That Works Survey
Rare Disorders NZ
Global Genes