Austin Letcher

Program and Operations Director @EngageHealthInc Passionate about #raredisease #research and improving the lives of underserved #patients and families

[Austin Letcher @Austin_Letcher]

Great news for Nieman-Pick Disease #patients Good thing @EngageHealthInc and @nnpdf did their burden of access study to understand the health insurance literacy of their patients and barriers to accessing coverage through insurance back in 2020! :)

https://t.co/0brXYDav4x

[Sanofi @sanofi]

Today, the @US_FDA approved the first and only therapy for non-CNS manifestations of #ASMD, a progressive and #RareDisease. Read more: https://t.co/Nph12cYnfH

[Sanofi @sanofi]

Today, the @US_FDA approved the first and only therapy for non-CNS manifestations of #ASMD, a progressive and #RareDisease. Read more: https://t.co/Nph12cYnfH

[Rachelle Dixon @RachelleM_Dixon]

@Austin_Letcher explaining @SanfordCoRDS to PAO’s at @PPALSorg

[Rachelle Dixon @RachelleM_Dixon]

It’s great to hear @SanfordBenF give an intro. to @SanfordCoRDS registry at @PPALSorg

[Stephanie Fischer @RarePOV]

What an amazing few days of learning & connecting at @PPALSorg!

[PPALS @PPALSorg]

Thank you to Casey from @SanfordResearch for giving the @PPALSorg group an excellent tour of the research facility. Very interesting and entertaining! #2019PACT #PatientAdvocacy @SanfordCoRDS

[Benjamin Forred @SanfordBenF]

Come check this out! Its yet another awesome FREE resource brought to you by @GlobalGenes. I'm so glad to be able to participate!

[SanfordCoRDS @SanfordCoRDS]

CoRDS just hit an exciting milestone this month - we now have 1000 of the estimated 7000 #rarediseases represented in the registry! #raredisease

[Austin Letcher @Austin_Letcher]

We've got a great team to make the 2019 Muscular Dystrophy Association Toast to Life the best yet! #raredisease https://t.co/R06dIKf7QF

[PPALS @PPALSorg]

Listen to @PPALSorg Co Founder @JFCConsultants talk about @PPALSorg and the Patient Advocate Certificate Training (PACT) program with @Austin_Letcher on the @SanfordCoRDS podcast https://t.co/62gLmLZUTr #PatientAdvocate #PatientAdvocacy #2019PACT

[PPALS @PPALSorg]

The registration link for the Patient Advocate Certificate Training (PACT) course, a collaboration between @SanfordResearch, @SanfordCoRDS, and Professional Patient Advocates in Life Sciences (PPALS) is now available online at https://t.co/5b0K53z3BI

[Benjamin Forred @SanfordBenF]

Always love running into our partners at events! We had a great #RareDiseaseDay chat with Sarah from @Fight_CRMO. Stop by our booth at #RDDNIH to learn how we can help create a registry for your group! #RareDC2019 #RareDiseaseWeek #SanfordRARE

[Skye Miu Steppe @skyemiusteppe]

Go check out @SanfordBenF’s table outside the rare conference!! They have lots of candy and sunglasses to give away!! 😂🙌🏻🤷🏼‍♀️#rareDC2019

[Benjamin Forred @SanfordBenF]

The end of the first day of @RareAdvocates @EveryLifeOrg #RareDisease week has got me feeling humbled. So many excellent people doing excellent things! It's been a pleasure meeting new people and catching up with old friends. See you all tomorrow! #RareDC2019 #SanfordRARE

[Benjamin Forred @SanfordBenF]

Stop by the @SanfordCoRDS booth at @RareAdvocates Legislative Conference! Learn how we can help build your patient registry - more important, grab a pair of CoRDS sunglasses and a fist full of candy :) #RareDC2019 #SanfordRARE

[Global Genes @GlobalGenes]

Thanks to @Austin_Letcher & @SanfordBenF of @SanfordCoRDS for sharing why they #CareAboutRare for World #RareDisease Day! We're excited to partner with them on an upcoming 3-part series of RARE Webinars on why & how to do scientific posters & how to engage researchers. #WRDD2019

[Austin Letcher @Austin_Letcher]

It's the first of the month again ... which means a new episode of CoRDS Cast is out! Listen to us speak with Sharon Nissley and Emily Lemiska from Klippel-Feil Syndrome Freedom and Dr. Philip Giampietro to learn more about klippel…https://t.co/Xgnq2vEzNP https://t.co/X6fPLX0TiP

[SanfordCoRDS @SanfordCoRDS]

This July 13th, @GlobalGenes and @EveryLifeOrg will be hosting a Rare on the Road at @SanfordResearch in Sioux Falls, SD! #raredisease Don't forget to register today: https://t.co/wg66CkOepn

[Austin Letcher @Austin_Letcher]

This July 13th, Global Genes and EveryLife Foundation for Rare Diseases will be hosting a Rare on the Road at Sanford Research in Sioux Falls, SD! #raredisease Don't forget to register today: https://t.co/RMjG0Dx0aC

[Benjamin Forred @SanfordBenF]

If you were unable to join @SanfordCoRDS yesterday for our webinar, please follow the link below and check it out! HUGE thanks to @Srotberg15 and Rob Pyatt for contributing and sharing their excellent perspectives! https://t.co/wHPeFPPlnD