Two rare disease dads took their films for Menkes Disease and USP7 & built them into a festival for all films on rare disease. https://xitter.cf/t.co/Qjsl21HRH4
NY and ME
Joined March 2020
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A new TV channel for rare disease stories. Add it to your Roku® or FireTV devices. thedisordercollection.com
Daniel on Menkes disease and the need to adjust expectations as a parent and facing the reality that Lucas' life would be short. #menkesdisease #cu29 #raredisease ononeconditionpodcast.com/ep…
Check out the latest issue of @RareRevolutionM and find our #rarediseasefilm review of @MichaelKeaton Knox Goes Away #cjd #cruetzfeldtjakobdisease #raredisease #rarediseasetruth #careaboutrare What Hollywood film that addresses a rare disease should we review next?
So pleased to announce this new book is coming out in November, and there's a chapter in it written by me. Proceeds will benefit @globalgenes
@apexsocialfamilies
@bedohavemovement
@hd_reach
@lemonadpressbooks
#PositivelyRareBook #RareDiseaseAwareness #rarediseasebooklaunch
The number one question we get from #raredisease advocates at #thedisorderchannel is How can I make a documentary about my rare disease? So we offer with @globalgenes the #rarelytoldstoriesworkshops and guidebook. #patientstories #patientvoice #careaboutrare #rarediseasetruth
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!
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Join Daniel "In the Room" tonight 8pm EST with #Courageousparentsnetwork #specialneedsparents #caregivers #worklifebalance #menkesdisease courageousparentsnetwork.org…
If you're in Philly for @InformaConnect #AccessUSA #RareDiseaseSummit be sure to catch a screening of two of our films #blau #lynchsyndrome #raredisease
Who is joining me (Daniel) here?
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
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
I'm thankful to Mix Talent for including me and Lucas and #MenkesDisease in this #raredisease awareness campaign for #RareDiseaseDay2024 . mix-talent.com/rare-disease-…
Have you wanted to tell the story of your life with a #raredisease as a documentary or a short video?
@GlobalGenes has partnered with The Disorder Channel to present workshop trainings to get you ready to make your story into a short film. globalgenes.org/rarely-told-…
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
This article gets into why I work at Global Genes, grieving a diagnosis, grieving the loss of Lucas, how The Disorder Channel was founded and more. Volume 8 page 22 #raritylife Thank you Ceridwen Hughes @SBDRareProject #menkesdisease
samebutdifferentcic.org.uk/r…
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
