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Greater New York City Area
Joined June 2012
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SmithSolve retweeted
Susan Thiele, Senior Director, Advocacy & Therapeutic Communications at Kyowa Kirin and Lisa Savitt from SmithSolve discuss their teams’ partnership in their presentation: Collaborate to Address Data Gaps and Care Barriers through Lived Experiences: The XLH Community Impact Survey at this mornings session at the 5th Chief Patient Officer Summit. Stay tuned for new XLH content on CheckRare. #DGEvents #CPOSummit #TeamSmithSolve #XLH
SmithSolve retweeted
Doctors couldn’t tell the five families with children who have a newly discovered rare condition why their toddlers were experiencing “global developmental delays,” including trouble eating and speaking.
Until last year. wapo.st/3HyUFOw
SmithSolve retweeted
Today we are celebrating #patientadvocates! Stay tuned for our shares highlighting the amazing work of our #community as they advocate passionately for #raredisease.
#NationalPatientAdvocacyDay
SmithSolve retweeted
The term “special needs” and “disabled” may seem synonymous, but they’re not. Experts oppose the use of "special needs," because its offensive and carries negative connotations. Advocates say they find power and community in the word disabled. bit.ly/3ggUSpq #SayTheWord
ALT Quote from Lisette Torres-Gerald, board secretary for the National Coalition for Latinxs with Disabilities: “I am not ashamed to be disabled; I consider it a difference that allows me to view the world in a different way than other people.”
SmithSolve retweeted
The role of mRNA in the rapid development of COVID-19 vaccines highlighted its strong suit: a great versatility that makes it possible to design a new drug for various rare diseases. Read more: ow.ly/svoz50ETHNv
SmithSolve retweeted
Incorporating mindfulness practices into your daily routine is a great way to help children transition between activities and recollect after challenging tasks. Little Renegades offers a free "Intro to Mindfulness" resource. Download yours today at bit.ly/3fQuxPv
SmithSolve retweeted
New #webinar: "Transitioning to Adult Care” on April 21 at 2:00pm ET. Join #NORD to learn how to plan for the transition from parent-supervised pediatric care to more independent adult care. #rarediseases Register: bit.ly/3dm5YXT
SmithSolve retweeted
Join us for a free virtual MDBR yoga class, Saturday April 17th @ 10:30am EDT. Let's work on our flexibility before our ride! Register today! bit.ly/MDBRyoga
SmithSolve retweeted
Last day to register for #RareAcrossAmerica2021
Start the year by making an impact on federal policy close to your home. Share your rare disease story and meet other rare disease advocates!
To register visit: RareAcrossAmerica.org
SmithSolve retweeted
The Young Adult Representatives of RDLA (YARR) are excited to launch the YARR Leadership Academy, a series of on-line courses offered to a select group of young adults in the rare disease community (ages 18-29).
Learn more and apply today! hearusyarr.org
SmithSolve retweeted
Introducing this year's RARE Champion of Hope Award nominees! Congratulations to these incredible individuals and organizations. Your determination and inspiring work in #raredisease does not go unnoticed. Learn more about the nominees here! globalgenes.org/rare-champio…
SmithSolve retweeted
A true collaboration-the 2019 CRN Family Conference allowed volunteers 2 contribute 2 the "Walk In My Shoes" #cystinosis documentary.Thank you 2 each & every participant in this labor of love. View film @ bit.ly/30LV336 #WalkInMyShoes #raredisease @Chanbone4 @editoneinc
SmithSolve retweeted
That's a wrap!
Today, #RareAcrossAmerica advocates geared up for their meetings with Members of Congress by practicing their pitches! @SmithSolve #FastForwardforRare
SmithSolve retweeted
Opinion: Patients, their family members, and the general public have historically been excluded from deciding the value of medicines. We believe that their voices and views should be essential to the conversation. buff.ly/2Zd9A8D
SmithSolve retweeted
‘It Will Consume Your Life’: 4 Families Take On Rare Diseases nyti.ms/2ABgf2Z
SmithSolve retweeted
1/4 If you or someone in your family has a rare disease, we want YOU to take the National Burden of Rare Disease Survey. The EveryLife Foundation for Rare Diseases in collaboration with the rare disease community has worked with health economists to develop the #burdenstudy
SmithSolve retweeted
Eric T Wong, MD, Associate Professor at @harvardmed discusses some of the reasons that patients may be interested in participating in a clinical trial, especially one involving a #raredisease. @harvardmed #clinicaltrial
checkrare.com/why-do-patient…
SmithSolve retweeted
‘As a healthcare professional, I bring a unique perspective to my interactions with patients.’
Read Cortney’s story about living with #SickleCellDisease >> ow.ly/PnbM50zfKYj
Tell your own story >> ow.ly/lvX150zfKYi
SmithSolve retweeted
Tomorrow is the BIG DAY! Join us for our virtual MDBR program and spin class from 11:15am - 1:00pm! Register today! milliondollarbikeride.org/re…
We CAN'T WAIT to see you!!! #PennMDBR2020!
SmithSolve retweeted
TODAY: @DavidFajgenbaum was diagnosed with Castleman disease when he was a 25-year-old medical student. After nearly dying in the hospital several times (and being told there was no cure) he decided to try and find his own treatment.