ACMCRN

Role: Research Assistant

Term: 6 weeks

Hours: Full-time

Salary: Unpaid

Qualifications: Experience with Excel, spreadsheets, charts/graphs or equivalent

Location: Remote, international applicants accepted

Sector: Rare Disease Research

Closing Date: Ongoing

Ideal Start Date: N/A

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, Excell, Google Sheets or other spreadsheet software.

Supervisor: Lori Verton

The ideal candidate will either be a graduate student in life sciences or research assistant/associate in clinical science. Candidate will be working on retrieving, managing and formatting data from our current Stuffthatworks.health research survey, and creating a poster abstract of interim results for presentation in upcoming Research Symposium.

• Experience with research presentations, spreadsheets and charting/graphing is required.

• Experience gained through undergraduate research projects is acceptable.

Note: Own laptop or desktop required

Apply here!