NWRareCoalition
@nw_rare
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We support the PNW’s rare disease community through programming, education, and by articulating a bipartisan policy platform to inform and engage policy makers.
Washington State
Joined January 2023
We're so excited to be kicking off 2023 on our new Northwest Rare Disease Coalition social media pages! We'll be sharing weekly coalition updates, information about events and advocacy tools on this page- stay tuned!
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✨Exciting news! We're partnering with TFA Analytics to launch the Complex Care for Kids pilot program. Hear Founder and CEO Torrie Fields speak at this year's #RareDisease Fair! RSVP today: #HealthcareInnovation #ComplexCare #NWRareDiseaseCoalition
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📣 Urge Washington State lawmakers to support: SB 5064/HB 1238, Forming a Washington State Rare Disease Advisory Council; HB 1444, Rapid Whole Genome Sequencing Access Expansion; HB 1697, Washington RUSP Parity
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We’re thrilled to announce the upcoming events for NW Rare! The 2025 Payer Forum, Fair, and Community Picnic aim to educate, engage, and inspire our community about the importance of rare disease research. To register and for more info:
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12 PM TODAY is the deadline to register your support for HB 1444! Help rare disease patients and families receive diagnoses more quickly, leading to less time spent in hospitals, fewer surgeries, and overall improved health outcomes. Sign in "PRO":
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HB 1444, making rapid Whole Genome Sequencing more accessible, is set to be heard TOMORROW. Register your support by signing "PRO". Help #RareDisease patients and families receive diagnoses more quickly:
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⏰BEFORE 12 PM PST TODAY: Register your support for the establishment of a rare disease advisory council (RDAC) in Washington state. HB 1238 – sign in ‘PRO’ at this link: SB 5064 – sign in ‘PRO’ at this link:
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The NW Rare Disease Coalition is gearing up for next year's legislative session! Thank you to everyone who attended yesterday's legislative briefing, and to Sen. @MarkoLiias for joining us and championing #RareDisease legislation in Washington state.
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Thank you to our partners at @myADLM and @SCHPLUGS for supporting our #RareDisease efforts! Together, we will continue to make discoveries that support #patient needs in this space. Read insights from the NW Rare Disease Coalition Payer Forum:
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Our friends at @Mary_Bridge are hosting a community film festival celebrating diverse perspectives and life experiences! Get your ticket for November 2nd today:
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#RareDisease Spotlight: Portraits of Humanity. PoH is a UW program that captures the lived experiences of those with chronic illness. The project pairs up students interested in healthcare with patient volunteers. Fill out the interest form by 10/12:
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#ICYMI: Last week, we hosted a Community Briefing alongside our wonderful #advocates and leaders in the #RareDisease space! Want to get up to speed as we prepare for the 2025 legislative session? Watch the briefing here:
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🗓️LAST CHANCE to RSVP for our Community Briefing this Wednesday! Join us at 12 pm PST to hear from grassroots leaders about #RareDisease advocacy opportunities in 2025:
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We are one week away from our community briefing next Wednesday! You'll hear from advocates about their grassroots advocacy experiences. Make sure to RSVP for this important event to prepare for the 2025 state legislative session:
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We are TWO WEEKS out from our Community Briefing! We've got policy experts and advocates joining us to discuss #RareDisease legislative engagements and outreach. RSVP today:
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📣 Community Briefing Reminder! On July 31st, we're holding a virtual briefing for #RareDisease advocates to cover legislative engagements and outreach. Join us to hear from advocates and experts alike:
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On July 31st, we're holding a virtual briefing for #RareDisease advocates to discuss upcoming legislative engagements and outreach. We'll hear from advocates about their grassroots advocacy experiences! RSVP today to prepare for the 2025 session:
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Thank you to our #RareDisease community. 2 days, 65+ speakers, 150+ attendees, and countless stories shared and relationships forged at this year's Payer Forum and Rare Disease Fair. We can't wait to see you all again soon!
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