Two rare disease dads took their films for Menkes Disease and USP7 & built them into a festival for all films on rare disease. https://teapawt.org/t.co/Qjsl21HRH4
NY and ME
Joined March 2020
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DISORDER: The Rare Disease Film Festival retweeted
A @NASEM_Health committee is seeking input from anyone impacted by, or interested in, U.S. #NewbornScreening to inform a study on strengthening and modernizing these essential programs. Learn more and sign up for email updates: ow.ly/aqVq50QMgmx
#Bioethics #HealthEquity
ALT A @NASEM_Health committee is seeking input from anyone impacted by, or interested in, U.S. #NewbornScreening to inform a study on strengthening and modernizing these essential programs. Learn more and sign up for email updates here: https://ow.ly/aqVq50QMgmx #Bioethics #HealthEquity
DISORDER: The Rare Disease Film Festival retweeted
A wonderful friend of Inspired Teaching & a wonderful organization. Don't miss out on this opportunity!
This Post is from an account that no longer exists. Learn more
DISORDER: The Rare Disease Film Festival retweeted
Join us in this exciting chance to connect with fellow #NewYork advocates, meet with state legislators, and help advance the policy priorities of the rare disease community. To be considered for a travel reimbursement, register by March 19.
Join us: bit.ly/36eRp8U
DISORDER: The Rare Disease Film Festival retweeted
Amazing news! Disabled Artist Showcase: Creating Our Spaces was just selected by International Gold Awards
@dasoultoucha @tonihickman @genentech @DisorderRare #rarediseases #smacommunity #sma #disabled #disabilities #cerebralpalsy #strokesurvivor
DISORDER: The Rare Disease Film Festival retweeted
We are pleased to announce the release of NEXT Report 2024: Rewriting the Rules. Download now to see how next-generation patient advocates have been instrumental in driving research, drug development & more: go.globalgenes.org/NEXT-2024
#NEXTReport #GlobalGenes #NEXTReport2024
ALT We are pleased to announce the release of NEXT Report 2024: Rewriting the Rules. Despite facing financial challenges, the rare disease sector has made remarkable strides with a notable surge in the approval of new medications. Download the 2024 NEXT Report now to see how next-generation patient advocates have been instrumental in driving research, drug development, and new ways to accelerate the diagnosis of rare diseases. Download here: https://go.globalgenes.org/NEXT-2024 #NEXTReport #NEXTReport2024 #GlobalGenes #NextGenerationAdvocacy #DrugDevelopment #RareDiseaseResearch #CareAboutRare #PatientAdvocacy #PatientAdvocate #RewritingtheRules
DISORDER: The Rare Disease Film Festival retweeted
It is Menkes Disease awareness, a rare disease caused by mutations in the ATP7A gene in the body. A film by @DisorderRare highlights families discussing life after diagnosis day, including a family with a Menkes Disease diagnosis. To watch:
youtube.com/watch?v=sAd1Oez3…
#MenkesDisease
DISORDER: The Rare Disease Film Festival retweeted
@zlwichter stuck on the jet bridge in omaha @united broke my wheelchair beyond me being able to use it. Heartbroken. Ground staff dropped chair off the conveyor belt.
No words. Exhausted.
#WheelchairRights #DisabilityTwitter
DISORDER: The Rare Disease Film Festival retweeted
Loved the #RarelyToldStories films at the @GlobalGenes Summit
@DisorderRare
Thanks for making the tip @ShundraWooten I know that wasn't easy and we are so grateful you were there.
#RareDisease 🦓🦓
DISORDER: The Rare Disease Film Festival retweeted
Tomorrow's #Signalise may be late! @thekattdazzle seems to be run down & has a virus-y child home. Stay tuned.
When we do drop this end of Sept episode, listen for a segment with @DisorderRare Daniel DeFabio.
DISORDER: The Rare Disease Film Festival retweeted
This is THE session for advocates. Learn how to talk to doctors and how to advocate for yourself! Live stream starting in 5 minutes: go.globalgenes.org/ras-x
@seattlechildren @TheMightySite
#RAREAdvocacySummit #WeekInRARE #CareAboutRare #RareDisease #GGSummit #GGSummit23
DISORDER: The Rare Disease Film Festival retweeted
Heya world new profile pic!
Side note: hire patients & caregivers to have a voice in the innovation process. They are THE #healthcare experts w/ THE lived experience needed to know how to make a real impact w/ tech 🌟
#frompaintopurpose #digitalhealth #thepatientinformaticist – at Woburn, MA
DISORDER: The Rare Disease Film Festival retweeted
I've been to a lot of #RareDisease family conferences and there is usually a theme of questions and concerns from families. 🧵
One of them is the confusion around whatever treatment being developed will work for their older children. There is always a somber silence...
DISORDER: The Rare Disease Film Festival retweeted
Ep20 of #Signalise a #Dazzle4Rare #podcast is up for your listening pleasure. We have a clip from @buttahflyk for #SarcoidosisAwareness Month + news from @DisorderRare on their new series. I edited solo this week so your harsh criticisms welcome!
podfollow.com/signalise-a-da…
DISORDER: The Rare Disease Film Festival retweeted
Watch this episode of the #raredisease siblings - it's pretty rad
@DisorderRare 🦸🧬
youtu.be/45rgDO3kGgE
DISORDER: The Rare Disease Film Festival retweeted
Catch our Director of Community Engagement, Daniel Defabio, at Informa Group Pharma Forum today! He will be screening his film and speaking about it afterward. #RareDisese #CareAboutRare @InformaConnect @DisorderRare #MenkesDisease
DISORDER: The Rare Disease Film Festival retweeted
I’d definitely stream The Disorder Channel from @DisorderRare first, & so should you.
Let’s use the #NewRokuTVs giveaway to learn more about, raise money & awareness for, & work towards treatments & cures for #RareDiseases.
@bobigelow @OnceUponAGene
thedisordercollection.com/
DISORDER: The Rare Disease Film Festival retweeted
I always like to share some rare disease podcasts/organizations so they can hear the family perspective too and get insight into the rare disease world! @OnceUponAGene @2DDPodcast @SaritaEdwards @DisorderRare
DISORDER: The Rare Disease Film Festival retweeted
EP10 doesn't spend lot of time on respite & self-care as a patient or carer but this clip is valuable advice. Host @thekattdazzle says, "you can't pour from an empty jug." Daniel expands expertly on the theme. #respite #selfcare #caregivers #carers
DISORDER: The Rare Disease Film Festival retweeted
I talked to Daniel of @DisorderRare last week for #Signalise. The episode drops tomorrow with a scoop! New content coming to The Disorder Collection on #Roku & #FirestickTV just in time for Festivus.
Catch the episode where ever you get podcasts.
⬇️
podfollow.com/signalise-a-da…
