DISORDER: The Rare Disease Film Festival

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/episodes/episo…

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

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

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

Join Daniel "In the Room" tonight 8pm EST with #Courageousparentsnetwork #specialneedsparents #caregivers #worklifebalance #menkesdisease courageousparentsnetwork.org/events/do-you-…

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

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

March is Trisomy Awareness Month, and Global Genes asked Gary David, a rare disease dad, caregiver, and advocate, to share his family’s experience with Trisomy 13 mosaicism. To read Gary’s story: go.globalgenes.org/4al86ej #CareAboutRare #TrisomyAwareness #Trisomy13

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

@KristinSmedley WTG!

Oh. My. Goodness. To be in classrooms again after leaving that setting 24 years ago to guide my blind sons to thrive is literally a dream come true! Kids are cheering for my #ChildrensBook and I am just as excited as they are! Book your #AuthorVisit at KristinSmedley.com

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

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

@AftrTheShock @OnceUponAGene @prk2 @JMGraglia @lukebrosen @DisorderRare @cdhwings

Thank you for this post, @NeenaNizar. You are one of those many, many #caregivers. I will add Effie Parks (@OnceUponAGene), Parvathy Krishnan (@prk2) & Mike Graglia (@JMGraglia). Dads are caregivers too. Please repost and add to the list!

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-d…

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-st…

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=sAd1Oe… #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/raritylife