Two rare disease dads took their films for Menkes Disease and USP7 & built them into a festival for all films on rare disease. rarediseasefilmfestival.com
Joined March 2020
- Tweets 407
- Following 205
- Followers 896
- Likes 525
135 Photos and videos
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A new TV channel for rare disease stories. Add it to your Roku® or FireTV devices. thedisordercollection.com
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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…
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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?
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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
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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
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DISORDER: The Rare Disease Film Festival retweeted
26 Mar 2024
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
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DISORDER: The Rare Disease Film Festival retweeted
22 Mar 2024
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…
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If you're in Philly for @InformaConnect #AccessUSA #RareDiseaseSummit be sure to catch a screening of two of our films #blau #lynchsyndrome #raredisease
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Who is joining me (Daniel) here?
18 Mar 2024
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
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DISORDER: The Rare Disease Film Festival retweeted
18 Mar 2024
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
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DISORDER: The Rare Disease Film Festival retweeted
6 Feb 2024
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
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DISORDER: The Rare Disease Film Festival retweeted
21 Feb 2024
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
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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-…
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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-…
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DISORDER: The Rare Disease Film Festival retweeted
17 Nov 2023
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
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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…
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DISORDER: The Rare Disease Film Festival retweeted
14 Oct 2023
@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
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DISORDER: The Rare Disease Film Festival retweeted
23 Sep 2023
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 🦓🦓
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DISORDER: The Rare Disease Film Festival retweeted
26 Sep 2023
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.
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DISORDER: The Rare Disease Film Festival retweeted
19 Sep 2023
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
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