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Mashup Score: 2Connecticut Establishes a Permanent Rare Disease Advisory Council - NORD (National Organization for Rare Disorders) - 2 year(s) ago
May 24, Hartford, CT – Yesterday, Governor Ned Lamont signed House Bill 5500 (HB 5500) into law which includes provisions to establish a permanent Rare Disease Advisory Council (RDAC) in the state of Connecticut. Connecticut established a temporary rare disease task force in 2017 that concluded its work in 2019, but the Rare Disease Advisory Council created Read more >
Categories: Latest Headlines, Rare DiseaseTweet
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Mashup Score: 1Celebrating Advocacy, Action and a Year of Success Building Rare Disease Advisory Councils - NORD (National Organization for Rare Disorders) - 2 year(s) ago
Seven Rare Disease Advisory Councils Established Since Launch of NORD’s Project RDAC Washington, DC – December 15, 2021 – In 2015, the first rare disease advisory council was created in North Carolina by patients, caregivers, families, and providers. This year, the National Organization for Rare Disorders (NORD), the leading advocate for the over 25 million Read more >
Categories: Latest Headlines, Rare DiseaseTweet-
As we enter the new year, let’s celebrate the growth and success of #RareDisease Advisory Councils (#RDACs)! Read about all the accomplishments of #ProjectRDAC on NORD’s blog: https://t.co/rSIUtmWaDW https://t.co/04ev6hry1I
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Mashup Score: 5
Rare Disease Advisory Councils can help solve problems faced by millions of Americans with rare diseases. Every state should have one.
Source: STATCategories: Latest Headlines, Rare DiseaseTweet-
News: 21 states give #RareDisease patients a seat at the table. The other 29 need to follow suit. Read more: https://t.co/PXnCu6IgDI Thank you @statnews for including NORD in this recent article! #ProjectRDAC
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Mashup Score: 0So Your State Just Enacted an RDAC - Now What? - 3 year(s) ago
Do you want to help the rare disease community in your state implement a strong, effective Rare Disease Advisory Council (RDAC)? RDACs help address the needs…
Source: YouTubeCategories: Latest Headlines, Rare DiseaseTweet-
In case you missed it, the webinar, "So Your State Just Enacted an #RDAC - Now What?" is now available on-demand! Watch it now: https://t.co/aTMtoXMR1C Access #ProjectRDAC resources here: https://t.co/CBQwJ6Mp5E
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Mashup Score: 1
Copyright ©2021 NORD – National Organization for Rare Disorders, Inc. All rights reserved. NORD is a registered 501(c)(3) charity organization. Please note that NORD provides this information for the benefit of the rare disease community. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical…
Categories: Latest Headlines, Rare DiseaseTweet-
New toolkit available from NORD's #ProjectRDAC! The toolkit, "Implementing a #RareDisease Advisory Council in Your State," will help states w/ newly signed RDAC #legislation discover the best practices from existing, high-functioning councils. Download: https://t.co/CBQwJ6Mp5E https://t.co/D1O4LiBNm3
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Mashup Score: 0Advocating For A Rare Disease Advisory Council In Your State - 3 year(s) ago
Do you want to help advocate for a Rare Disease Advisory Council (RDAC) in your state? An RDAC helps address the needs of rare patients and families by givin…
Source: YouTubeCategories: Latest Headlines, Rare DiseaseTweet-
ICYMI: Check out NORD's second #ProjectRDAC toolkit webinar, "Advocating for a #RareDisease Advisory Council in Your State" focused on the legislative phase of creating an RDAC. Watch the recording now: https://t.co/EQ7oqStmuS
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Mashup Score: 0RDACs by State - NORD (National Organization for Rare Disorders) - 3 year(s) ago
Click below on your state to see the current status of a Rare Disease Advisory Council. Questions? Email [email protected]. RDAC MapAlone we are rare. Together we are strong.®
Categories: Latest Headlines, Rare DiseaseTweet-
Find out if your state has a #RareDisease Advisory Council: https://t.co/Ll3RkM5kyW #ProjectRDAC #RareAction https://t.co/IPg1hq6Hpd
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Mashup Score: 0
There are over 7,000 currently known rare diseases impacting the lives of more than 25 million Americans and their families. Information can be scarce, resources limited, and patients are scattered around the nation, creating an environment in which individuals and families face a myriad of challenges in every state. It can also be difficult for state policymakers and government officials to have…
Categories: Latest Headlines, Rare DiseaseTweet-
Heidi Ross (#NORD): We’re all a community – the #raredisease community. We are encouraging diverse representation for these advisory councils so we can incorporate the entire community’s perspective. #ProjectRDAC #RareAction Learn more or get involved: https://t.co/I8VmPg6JBo https://t.co/JJRXz8CYaA
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Mashup Score: 0Task Force Reports - 3 year(s) ago
Access to Genetic Testing for Rare DiseaseDownload Newborn Screening and Earl Intervention Download
Categories: Latest Headlines, Rare DiseaseTweet-
Tara Britt (NC RDAC): Our #RareDisease Advisory Council was able to develop white papers that helped inform & pass legislation for 4 new #NewbornScreening indicators in NC. #ProjectRDAC View the toolkits: https://t.co/qsLf4CqRZd
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Mashup Score: 0
Rare Disease Advisory Council Stakeholders MeetingDecember 16, 2020 2:30 PM-4:30 PMETThe National Organization for Rare Disorders (NORD) is excited to host the inaugural public meeting for Project RDAC on December 16 from 2:30p.m.-4:30p.m. ET. During this meeting, members of the rare disease community and interested stakeholders will be joined by members of the existing 14 councils and at least…
Categories: Latest Headlines, Rare DiseaseTweet-
Erica Barnes (MN RDAC): We wanted to address #rarefiseases collectively and in a systematic way. #ProjectRDAC #RareAction Don't miss out, join the meeting now: https://t.co/dKtp6cWpqd https://t.co/1LoAwypzoq
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NEWS: Connecticut Establishes a Permanent Rare Disease Advisory Council. Read more: https://t.co/YJMN3fiN6N #RareDisease #ProjectRDAC #Advocacy