Term: 6 weeks

Status: Unpaid

Qualifications: Executive Administration experience or certified (Required) education

Location: Home based. International applicants accepted

Hours: Full-time

Sector: Rare disease research

Closing date:Ideal start date:

About the Company

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.

About the Role

Duration: 6 weeks unpaid with possibility of further paid contract hours at the completion of the internship. 35 hours per week, online, remote. Mostly on own schedule except for required update meetings. Materials required: Computer and internet access, Google Workspace, and other associated Word/Mail/Calendar programs. If software registration is required, it will be provided by the nonprofit.

Supervisor: Lori Verton

The ideal applicant will have post- secondary training in Executive Admin or other Business Administration training or relevant experience. Candidate will be assisting the President with administrative duties including creating and maintaining file systems, ensuring compliance of all documentation with regards to non-profit management, and various administrative projects as assigned.

Note: Own laptop or desktop required

We look forward to hearing from you!