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RDAC advocacy updates: conditional waivers, emergency protocols, meeting schedule and NORD conference representation
Summary
The RDAC advocacy committee reported growth and plans to pursue conditional waivers and emergency-protocol recognition for rare conditions; the council set August as a virtual meeting and scheduled an in-person meeting for Dec. 9 and discussed sending one or both chairs to the NORD conference in October.
Mary Caruso, caregiver representative and lead of the RDAC—s advocacy subcommittee, said the committee has grown to about 10 members and plans to meet in mid-August to prepare legislative and advocacy guidance. The committee identified two carryover issues from the prior year: emergency medical protocols for people with rare conditions and a conditional or compassionate waiver for children born with devastating progressive disorders.
Leslie said the council must meet with DPH—s emergency medical officials and with DDS to pursue conditional-waiver language. "We can get these emergency protocols certified by physicians so that, when you go into an emergency room or…
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