News & Opinion Youth
Powering up the voices of the youth rare disease community
Role: Research Assistant
Term: 6 weeks
Qualifications: BSc. or Associate degree with relevant experience. MSc or graduate student preferred.
Must have experience with research projects and research presentations
Project: Create poster abstract from datasets
Location: Home based. International applicants accepted
Sector: Rare disease research
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:
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
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.
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, Excel, 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
We look forward to hearing from you!