ACMCRN leads the Arachnoiditis community in collaborative efforts in research, education, and advocacy. Our mission is to advance Arachnoiditis knowledge through collaborative research, patient education, and the establishment of the Arachnoiditis International Patient Registry. We are dedicated to uniting patients, caregivers, doctors, and researchers to work together as a single team, utilizing rare disease data sharing, online community engagement, and the latest research tools to advance our understanding and treatment options for Arachnoiditis and Chronic Meningitis.
ACMCRN continues to lead the collaborative effort by bringing patients, caregivers, doctors, and researchers together as one cohesive team to advance research and education within the Arachnoiditis community. We aim to employ the latest rare disease research strategies, leverage patient-centered outcome research, and partner with global Arachnoiditis experts to further our understanding and uncover new treatment possibilities. Our recent accomplishment, the Arachnoiditis International Patient Registry, is a cornerstone of our vision, serving as the basis for clinical trials and peer-reviewed research.
We achieve our mission by focusing on four strategic areas:
Our research utilizes the latest rare disease research strategies and collaborates with global Arachnoiditis experts to enhance our understanding of the condition and explore potential treatments. The Arachnoiditis International Patient Registry provides the necessary infrastructure for clinical trials and peer-reviewed research.
We unite patients, their families, physicians, researchers, and industry partners through online forums, newsletters, Zoom peer support, and collaborations with rare disease organizations. We maintain partnerships with organizations representing conditions like Tarlov Cyst, CSFleak, and Ehlers-Danlos.
Awareness & Fundraising:
We prioritize awareness and education, aiming to shed light on the underdiagnosis of Arachnoiditis. Our educational materials cater to both patients and physicians. We collaborate with organizations such as The Tennant Foundation, Global Gene's Compassion Pairing Program, and others to support awareness and education projects.
We maintain active social media channels to provide the latest updates on research and education. Our private and public Facebook groups, as well as Instagram, LinkedIn, and Twitter, encourage daily patient engagement. Our future goal includes creating a peer support channel through this website by the end of 2023.
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.