Membership
ASPIRE Membership
ASPIRE brings together these stakeholders across the amyloidosis community to drive innovation through partnership. With limited resources and persistent unmet needs in rare diseases like amyloidosis, collaboration is essential to accelerate meaningful progress, reduce duplication of efforts, and use resources efficiently. Supported by the rare disease community, ARC is uniquely positioned to facilitate collaboration across stakeholders to address significant challenges that exist that would benefit greatly from cooperative solutions. By bringing together expertise and facilitating strategic partnerships across members, and on a project basis across additional stakeholders in the community, the Collaborative aims to fund initiative that address unmet scientific, technical, clinical, and regulatory needs and help to improve the lives and outcomes of patients with systemic amyloidosis.
Governance and Leadership
Each working group has two chairs who also serve on the Executive Steering Committee, providing leadership, facilitation, and oversight of ASPIRE’s financial and operational processes. The ARC Board approves the Committee Chair and the Collaborative’s goals. An ARC employee serves as the Collaborative Director and Committee Chair, leading its management. All Collaborative activities require ARC approval, but ASPIRE’s leadership and programs are managed separately from ARC’s other initiatives.
Membership Fees
The Collaborative is sustainable and self-funded through membership dues. Its budget shall support core operating functions, in addition to consensus-approved programs. Membership fees support the management and core operating functions of the Collaborative and are due on an annual basis. There is a membership fee structure that is reviewed annually by the Executive Steering Committee.
Membership Benefits
Membership of ASPIRE is open to all life sciences organizations working in amyloidosis. Membership demonstrates a public commitment to accelerating innovation and meaningful change for the Amyloidosis community through multi- stakeholder engagement, resource sharing, and an endorsement of the mission, values, and guiding principles of ASPIRE.
- Active participation in 1 Working Group, Appointment of 1-2 reps, Quarterly updates from other 2 Working Groups
- Complimentary participation in Collaborative Membership meetings
- Opportunity to submit project proposals for evaluation, consideration, and approval to the Collaborative
- Member-level vote on the selection of priority projects
- Invitations to participate in project-specific Working Group(s), including ability to nominate co-lead on Working Group projects
- Opportunity to nominate delegates to Executive Steering Committee position(s) when vacancies arise and to vote in elections for Executive Steering Committee positions
- Public recognition of commitment and participation in the Collaborative on print and digital materials, including specific materials associated with Working Group deliverables, as appropriate
- Acknowledgement of financial support in high impact venues, such as signage at scientific meetings (ASH, ISA, etc.)
- Networking opportunities
- Active participation in 2 Working Groups, Appointment of 1-3 reps, Quarterly updates from other 1 Working Group
- Complimentary participation in Collaborative Membership meetings
- Opportunity to submit project proposals for evaluation, consideration, and approval to the Collaborative
- Member-level vote on the selection of priority projects
- Invitations to participate in project-specific Working Group(s), including ability to nominate co-lead on Working Group projects
- Opportunity to nominate delegates to Executive Steering Committee position(s) when vacancies arise and to vote in elections for Executive Steering Committee positions
- Public recognition of commitment and participation in the Collaborative on print and digital materials, including specific materials associated with Working Group deliverables, as appropriate
- Acknowledgement of financial support in high impact venues, such as signage at scientific meetings (ASH, ISA, etc.)
- Networking opportunities
- Active participation in all 3 Working Groups, Appointment of 1-4 reps, Access to real time project updates across all three Working Groups
- Complimentary participation in Collaborative Membership meetings
- Opportunity to submit project proposals for evaluation, consideration, and approval to the Collaborative
- Member-level vote on the selection of priority projects
- Invitations to participate in project-specific Working Group(s), including ability to nominate co-lead on Working Group projects
- Opportunity to nominate delegates to Executive Steering Committee position(s) when vacancies arise and to vote in elections for Executive Steering Committee positions
- Public recognition of commitment and participation in the Collaborative on print and digital materials, including specific materials associated with Working Group deliverables, as appropriate
- Acknowledgement of financial support in high impact venues, such as signage at scientific meetings (ASH, ISA, etc.)
- Networking opportunities
Contact
If you are interested in joining this collaborative or have any additional questions on membership, please contact Megan Glynn at mglynn@arci.org.
