The Global Liver Institute is launching a new initiative in pediatric and rare liver diseases and is seeking a college or graduate student intern to assist the CEO with the following:
- Research on medical societies and advocacy organizations (US and global) serving pediatric and rare liver diseases – producing a landscape report
- Outreach to medical societies and advocacy organizations (US and global) serving pediatric and rare liver disease – providing call summaries, drafting invitation letters
- Convening a pediatric and rare liver diseases policy meeting – identifying medical literature and policy documents for background to support the meeting agenda
- Internet research (access to medical journals a plus)
- Translation of complex medical information into lay language
- Business writing
- Ability to work remotely and independently
Background on Pediatric and Rare Liver Diseases Council
Successful research and development for treatments for pediatric and rare diseases lag far behind development for adult treatments for common diseases, however innovative regulatory and financing/reimbursement models accompanied by maturation of the rare disease patient space driving investment, data collection and sharing, and clinical collaborations provide a great deal of optimism and a strong foundation for growth.
Unfortunately, low levels of awareness and public health prioritization of liver diseases and fragmentation of the liver community have resulted in pediatric and rare liver diseases being underrecognized, underfunded, and underrepresented even within the pediatric and rare disease space as a whole.
The Global Liver Institute (GLI) has experience in creating collaborative initiatives for patient-driven multi-stakeholder identification and achievement of goals that significantly advance liver health and the health of the liver community. Specifically, in 2017 GLI launched the NASH Council which has grown to 44 academic, organizational and corporate members, leads International NASH Day in 22 countries with 65 partners, developed a focused campaign on non-invasive diagnostic technology called Beyond the Biopsy partnered with FNIH, executed multi-platform communications campaigns including medical and policy journal perspectives, and has conducted legislative briefings and regulatory comment submission. In 2019 GLI launched the Liver Cancers Council and expanded the #Octoberis4Livers liver cancer awareness campaign, issued proclamations with more than 30 signatories on the importance of screening/early diagnosis, supports academic Specialized Programs of Research Excellence (NCI SPOREs), and has legislation now introduced in the House and Senate.
We are confident that we can bring this same level of energy and excellence to the pediatric and rare liver disease space. Since our founding in 2014 by a PSC patient/liver transplant recipient we have supported the efforts of the pediatric and rare liver disease community through mentoring, social media, and regulatory contributions and look forward to this opportunity to greatly scale up our participation and leadership in this space.
- Elevate the visibility and voice of the pediatric and rare (cholestatic) liver diseases community
- Strengthen the organizational infrastructure of pediatric and rare (cholestatic) liver diseases organizations
- Advance the policy agenda in pediatric and rare (cholestatic) liver diseases
- Identify common elements to accelerate research in pediatric and rare (cholestatic) liver diseases
- Outreach to advocacy members
- Outreach to clinical/research members
- Landscape Analysis Report
- Briefs on organizations’ size, scope, leadership, structure, programs
- Research/Clinical trials
- Gaps & Goals Survey
- Collaborative Agenda Development (potential topics below)
- Decrease time to diagnosis (execute Global Commission to End the Diagnostic Odyssey for Children recommendations)
- Address/Align around common research challenges (e.g. pruititis)
- Align registries with common data model
- Develop educational materials for primary care and specialists for treatment of rare liver patients
- Collaborative social media amplification
- Reaching patients/families outside US and EU
- Kick-Off Meeting/Launch Event
- Dedicated Pediatric and Rare Liver(cholestatic) Diseases page and Council portal on GLI website