@appstate '18 | @AmericanU MPP '20 |@RareAdvocates Associate Director | (she, her, hers) | Opinions are my own
Joined April 2020
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Katelyn Laws retweeted
“This is a pivotal point in time where government leaders, advocacy organizations, healthcare community, scientific community and industry come together and take an epic leap forward to improve the lives of so many people in the rare disease community.” - Duane Clark @sanofi
Katelyn Laws retweeted
“Rare diseases are not a rare problem. Millions are affected, and many do not know they have a rare disease." @RepGusBilirakis Rare Disease Caucus Co-Chair #CaucusBriefing
Katelyn Laws retweeted
"I am incredibly optimistic that this study will be used by leaders to make meaningful policy changes to shorten the diagnostic odyssey for patients and families — that will be life changing for millions of families.” Sarah Marshall @UDNconnect
Rare disease nonprofit organizations: Be sure to check out our Rare Giving program! We are offering sponsorships for both events and tools/resources. Applications will close on October 27th.
Did you know that we have a program that can provide financial support to organizations in the rare disease advocacy and public policy space? If you're interested in this opportunity, don't forget to check out Rare Giving!
Apply here: raregiving.org
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ATTENTION OHIO ADVOCATES:
Ohio Ohio Ohio, we're coming your way!
We need YOU and every resident of #Ohio who is impacted by rare disease to join us for Rare Disease State Advocacy Day on October 17th, and make your voice heard.
To register and learn more visit: bit.ly/36eRp8U
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Katelyn Laws retweeted
Are you ready to take your advocacy journey to the next level?
Rare Advocacy Learning is a free, six-week seminar series that provides in-depth education and advocacy training, developing a pathway toward year-round advocacy engagement.
Apply here bit.ly/3sdfSUb
Invite your newly elected Members of Congress to be champions for the rare disease community and join the Rare Disease Congressional Caucus!
As a rare disease advocate you are a very important part of the legislative process. You can make a difference by making your voice heard by your Senators and Representatives.
Please take action and contact your Members of Congress: bit.ly/3Qy1zUK
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Join us for the last RDLA webinar of 2022! During this webinar, advocates will hear from a panel of policy experts on what to expect for rare disease policy priorities in the lame duck session and the new Congress in 2023.
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Panelists include:
Jenifer Ngo Waldrop, Rare Disease Diversity Coalition
Nicholas Manetto, Faegre Drinker Consulting
Cheryl Jaeger, Williams & Jenson PLLC
To register, click the link below:
lnkd.in/ecdp25Ma
Katelyn Laws retweeted
ICYM: Check out this year's #RareVoiceAwards2022 finalists and register to attend in person on December 14th: rarevoiceawards.org
linkedin.com/video/live/urn:…
If you're interested in learning more about how you can help get end-of-year rare disease policy priorities across the finish line, join us on November 15th for the November RDLA Webinar! To register or learn more, click the link below.
everylifefoundation.org/rare…
Katelyn Laws retweeted
STOLEN - Brown Lectric eBikes XP Lite in Northwest Washington bikeindex.org/bikes/1414715
DMV FRIENDS: Please help me find my stolen e-bike! The e-bike was stolen Wednesday, October 12th on the corner of 11th & F St NW in downtown D.C. Whoever stole it does not have a key so they must be using it manually.
bikeindex.org/bikes/1414715
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Katelyn Laws retweeted
The @EveryLifeOrg is offering a limited number of travel reimbursements for advocates attending Rare Disease Week on Capitol Hill 2023 in Washington D.C. #raredc2023
To learn more and apply visit: lnkd.in/eyWNHepM
It was an honor to speak to attendees at @GlobalGenes RARE Patient Advocacy Summit about beginning their rare disease advocacy journey. If you're interested in getting involved, visit rareadvocates.org or reach out to me at klaws@everylifefoundation.org! #RDLA #raredisease
Our panel of #RareDisease advocates talking about their #advocacy journey as parents, young adults and patients. @ramirezholmes, Ali SP and Laura Romano join @KatelynALaws
Katelyn Laws retweeted
Happening Tomorrow: As part of Newborn Screening Awareness Month, the RDLA will be hosting a Virtual Rare Disease Caucus Briefing: "The Urgency of Innovation in Newborn Screening: Building a Sustainable System".
Join us on September 21st at 12:30 p.m. ET: bit.ly/3qTV2aS
Make an impact on federal policy close to your home by participating in Rare Across America! RDLA organizes meetings with your Members of Congress at the Member's in-state, district office. Virtual and In-Person meetings will take place between August 8th-19th. (THREAD)
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