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RDAC awareness project advances; members briefed on website funding and state contracting via Department of Public Health
Summary
The RDAC's awareness committee is compiling a statewide contact list of patient groups, nonprofits, researchers and industry; members were asked to volunteer for data collection. Department of Public Health staff warned that state contracting for any future website or grants will be complex and potentially slow.
The RDAC's awareness committee reported progress compiling a statewide list of rare-disease stakeholders and asked members for volunteers to help with data collection and verification. The council also discussed next steps for building an RDAC calendar and pursuing funding to create a public website or centralized events calendar.
Colleen Brunetti, chair of the awareness committee, described the committee's work: volunteers are populating a multipage spreadsheet by category (patient groups, pharma, research) and capturing headquarters, contact details and social media presence. The list is intended to be a legislative and outreach tool to show representatives the rare-disease stakeholders in each district. Brunetti asked for additional volunteers to take assigned ranges of entries and said the spreadsheet lives in the RDAC main folder.
Miriam (Department of Public Health staff) briefed the council on options to receive and disburse funds through the Department of Public Health (DPH). She cautioned that state contracting rules may require Requests for Proposals or other procurement steps depending on the award size and purpose and noted that state fiscal processes are "complex" and "not fast." She suggested the council identify potential funding sources while DPH staff work through contracting logistics, including whether a fiduciary or intermediary would be needed.
Council members discussed meeting sites for in-person sessions through the fall and asked DPH staff to meet with an RDAC executive group to discuss contracting, timelines and next steps.
Ending: The council will identify potential grant sources, compile a volunteer list to finish the awareness spreadsheet, and schedule a follow-up meeting with Department of Public Health contracting staff to clarify procurement and funding logistics.
