News & Opinion Youth
Powering up the voices of the youth rare disease community
Term: 6 weeks
Qualifications: Must have experience with Quickbooks or other bookkeeping software. Previous experience setting up bookkeeping practices in organisation is ideal
Location: Remote, international applications accepted.
Sector: Rare disease research/education/peer support/advocacy
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 peer-reviewed research. We also provide educational and peer support programs and advocacy efforts.
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.
Peer Support programs are under development. Our new Arachnoiditis Awareness fundraising store has now opened at acmcrn.myshopify.com
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. 3 to 5 hours per week, online, remote. Mostly on own schedule except for required update meetings.
Supervisor: Lori Verton
The ideal candidate will have basic bookkeeping experience or education in accounting processes.
Must know how to setup a bookkeeping account using an accounting software program like Quickbooks or other. Software registration will be provided by ACMCRN non-profit , however candidates will require their own computer with internet access. Must be a self-starter who is comfortable and confident using the chosen bookkeeping software and does not require hands-on supervision or software instruction. Candidate will be setting up books from scratch.
Note: Own laptop or desktop required
We look forward to hearing from you!
Find out more about ACMCRN here.