EliseCook Foundation

Advocacy group for patients and researchers of #RareDiseases. Be a FACE for rare disease: Fundraising, Awareness, Community, Education.

[Steve Gleason - "Live Impossible" @SteveGleason]

Just a walk in the park.
-SG #KeepExploring

[EliseCook Foundation @ECFoundation]

https://t.co/I2SE5XknBJ

[Loukisha Story @LoukishaStory]

Insurance companies are threatening patients’ rights in California. Send an email to your state senator and urge them to oppose S.B. 1156. Please share and get the word out for we need your help! #HAE #RareDisease

https://t.co/pmUGQbkS28 …

[EliseCook Foundation @ECFoundation]

https://t.co/WhCB0gEocp

[EliseCook Foundation @ECFoundation]

Today is recognized internationally as #RareDiseaseDay a day to spread awareness to the 30+ million Americans, and millions more worldwide, affected by one of the 7000 recognized rare or orphan diseases.

https://t.co/gHxbQ1zSf7

#ArmandsHope #CureGM1 @CureGM1 @GlobalGenes

[Kendall Davis, MPH @KendallJD28]

Alright RARE advocates!!! Let’s do this! I cannot wait to see all of you this week! @GlobalGenes @EveryLifeOrg @RareAdvocates #CareAboutRare #raredc2018

[RARE Foundation @RareAdvocates]

It's an exciting day as we have nearly 400 patient advocates from across the nation heading to the Capitol to have their voices heard by Members of Congress and staff. We are grareful to @vertexpharma for sponsoring our Lobby Day Breakfast to start the day right! #RareDC2018

[RareConnect @RareConnect]

Read the @eurordis webpage on #undiagnosed #rarediseases. https://t.co/SrYB2i4fUE

[Jonah's Just Begun @JJB4CURE]

Setting up for @WORLDSymposia 2018! Come say and learn all about #MissionHide&Help and #ConnectMPS #CUREmps

[WORLDSymposia @WORLDSymposia]

Excited to start our 14th Annual Meeting.

[WORLDSymposia @WORLDSymposia]

Steven Gray presents Identification of novel AAV capsids for treatment of lysosomal disorders #WORLDSymposia

[EveryLife Foundation @EveryLifeOrg]

Interested in #raredisease advocacy? Consider joining Community Congress to help guide our efforts on public policy, #newbornscreening and regulatory science. Learn about the focus about each working group at https://t.co/CBNoMGd1Oo There is no charge for patient organizations!

[Rare Disease UK @rarediseaseuk]

Patients tell us that one of the hardest things about having a #raredisease is that often their doctor may not have much information about the condition. We have an information and support page available on our website: https://t.co/IgoUtaTvXM

[Global Genes @GlobalGenes]

Just in time for #WRDD2018, Invitae has made genetic testing more affordable by reducing the cost of the panel and single-gene testing.

[Fabry, Australia @FabryAustralia]

There's a new way to #ShowYourRare for #RareDiseaseDay 2018! Customise your Facebook profile picture with the... https://t.co/RbHOKL2kz7

[Rare Disease UK @rarediseaseuk]

.@eurordis have launched their #RareDiseaseDay video for 2018! Featuring the #ShowYourRare, show you care campaign! You can watch it here: https://t.co/WncSZmK7cS

[CORD @raredisorders]

.@rarediseasedayDay #ShowYourRare Day 2018 official video #rarediseaseday

[WORLDSymposia @WORLDSymposia]

Full Abstracts Available to Registered Attendees in #WORLDSymposia 2018 Mobile App. View online here: https://t.co/Rbd75jtfWo or download here: https://t.co/GrAHIl0L47

[National Organization for Rare Disorders (NORD) @RareDiseases]

TAKE ACTION w #raredisease advocates who support the #OrphanDrug Tax Credit. Tell Congress 2 oppose its repeal: https://t.co/ZIAIF6zqP6

[EliseCook Foundation @ECFoundation]

https://t.co/psx6fw51Gm

[WLKY @WLKY]

9-year-old cancer patient asks for cards to celebrate 'last Christmas early https://t.co/BMud72HGUd

[EliseCook Foundation @ECFoundation]

@RareDiseases @ASlavitt