DISORDER: The Rare Disease Film Festival

Two rare disease dads took their films for Menkes Disease and USP7 & built them into a festival for all films on rare disease.

[DISORDER: The Rare Disease Film Festival @DisorderRare]

A new TV channel for rare disease stories. Add it to your Roku® or FireTV devices. https://t.co/I8UFPjHfyU

[DISORDER: The Rare Disease Film Festival @DisorderRare]

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 https://t.co/z0rpfC2a75

[DISORDER: The Rare Disease Film Festival @DisorderRare]

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?

[DISORDER: The Rare Disease Film Festival @DisorderRare]

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

[DISORDER: The Rare Disease Film Festival @DisorderRare]

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

[Global Genes @GlobalGenes]

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: https://t.co/aXQDEqjGIJ
#Bioethics #HealthEquity

[Center for Inspired Teaching @InspireTeach]

A wonderful friend of Inspired Teaching & a wonderful organization. Don't miss out on this opportunity!

[DISORDER: The Rare Disease Film Festival @DisorderRare]

Join Daniel "In the Room" tonight 8pm EST with #Courageousparentsnetwork #specialneedsparents #caregivers #worklifebalance #menkesdisease https://t.co/5fetUuNELR

[DISORDER: The Rare Disease Film Festival @DisorderRare]

If you're in Philly for @InformaConnect #AccessUSA #RareDiseaseSummit be sure to catch a screening of two of our films #blau #lynchsyndrome #raredisease

[DISORDER: The Rare Disease Film Festival @DisorderRare]

Who is joining me (Daniel) here?

[RDLA @RareAdvocates]

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: https://t.co/a9L4VSEh0l

[RDLA @RareAdvocates]

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: https://t.co/a9L4VSEh0l

[DISORDER: The Rare Disease Film Festival @DisorderRare]

@GlobalGenes I always love Gary David's insights into this life.

[EmmittThrower @EmmittThrower]

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 @DisorderRare]

@KristinSmedley WTG!

[Global Genes @GlobalGenes]

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: https://t.co/qy4OjIUeR1

#NEXTReport #GlobalGenes #NEXTReport2024

[DISORDER: The Rare Disease Film Festival @DisorderRare]

@NeenaNizar @AftrTheShock @OnceUponAGene @prk2 @JMGraglia @lukebrosen @cdhwings Thanks my friend. Finding others that travel the same path is such a help.

[DISORDER: The Rare Disease Film Festival @DisorderRare]

I'm thankful to Mix Talent for including me and Lucas and #MenkesDisease in this #raredisease awareness campaign for #RareDiseaseDay2024 . https://t.co/eykVBjrpiq

[DISORDER: The Rare Disease Film Festival @DisorderRare]

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. https://t.co/sNlqmf0ctW

[Global Genes @GlobalGenes]

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:
https://t.co/vk249qqKJW
#MenkesDisease

[DISORDER: The Rare Disease Film Festival @DisorderRare]

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

https://t.co/6NbkHhisDG