orphanwriter

Senior Advisor, National Organization for Rare Disorders. Honored to work with amazing #raredisease patients, caregivers, researchers & clinicians.

[orphanwriter @orphanwriter]

How can #raredisease patient organizations advance #research on their diseases? @CureFA_org shares insights in this interview with @RareDiseases. https://t.co/pp91VibPvU

[orphanwriter @orphanwriter]

Honored to share thoughts on "Advocacy in #RareDisease: Crafting the Public Narrative" with the amazing @SparshPurhythm and NIH communications expert Anne Rancourt. #patientadvocacy #awareness https://t.co/xe5kf2inPI

[orphanwriter @orphanwriter]

An important message from a great organization.

[MoebiusSyndromeFdn @MoebiusSyndrome]

Help us stop the stigma about visible differences. Tell the world what you love to do & what makes you who you are.

Be seen. Be heard. Be accepted. #FaceEquality #WeWillNotHide

#moebiussyndrome #MSF

[orphanwriter @orphanwriter]

Great presentation at #RDDNIH today!

[CACNA1A Foundation @cacna1a]

Getting #RareDiseaseDay started here at @NIH. Stop by our booth to learn more about how we are accelerating our community’s path to clinical trials #CACNA1A #RDDNIH

[orphanwriter @orphanwriter]

#ShowYourStripes for #RareDiseaseDay!

[orphanwriter @orphanwriter]

Thank you, @MaryKForrest, for sharing this on behalf of parents everywhere who have experienced the loss of a child. Please know that Henry and your family are an inspiration for many in the #raredisease community. #Rettsyndrome #rarediseaseday https://t.co/aSao9We9JG

[National Organization for Rare Disorders (NORD) @RareDiseases]

NORD is seeking to identify the questions most frequently asked about #GeneticTesting to create an educational resource for #patients & #caregivers. Please send your questions or those of your patients to [email protected] by Friday, October 14!

[orphanwriter @orphanwriter]

What are the FAQs about #genetictesting? @RareDiseases will be creating a new resource for #raredisease #patients & #caregivers. Write to [email protected] with your questions or those you hear frequently from patients.

[orphanwriter @orphanwriter]

@notsorarepodcast hoping to connect with Taylor and Liz. Please write to [email protected].

[orphanwriter @orphanwriter]

@RichardEngel So very sorry to hear this. Henry and his family have been, and will continue to be, inspirations for many in the #raredisease community.

[National Organization for Rare Disorders (NORD) @RareDiseases]

There are currently 31 NORD #RareDisease Centers of Excellence across the US. Check out this @CheckRare article for insight from @kishnani_priya, MD, of @DukeMedSchool on this network to advance care & expand access for rare patients. https://t.co/yk608byfPu

[orphanwriter @orphanwriter]

Looking forward to this excellent program on April 29th for #UndiagnosedDay2022. Free and open to all. No registration required. Hosted by UDNI and the Wilhelm Foundation. Starts at 7:30 AM EDT. #rarediseases #undiagnosed https://t.co/0b91Bi9qnd

[orphanwriter @orphanwriter]

Do you have insights to share on #rarediseases or #orphanproducts? Tomorrow is the final day for speaker submissions for the 2022 #NORDSummit. https://t.co/26G0jyDtUo

[orphanwriter @orphanwriter]

Amazing agenda for today's #FDA #RareDiseaseDay program. The program is free and open to all. #FDARare2022 https://t.co/5Kw5lqzl4U

[orphanwriter @orphanwriter]

It's amazing to see how #RareDiseaseDay has grown since it was launched in Europe by EURORDIS in 2008 and brought to the US by NORD in 2009. #ShowYourStripes to keep the momentum growing! #RareDiseases

[ACMG @TheACMG]

Our letter to @nytimes editor responding to #NIPT screening article has been published. ACMG Pres-Elect Dr. Susan Klugman explains these are screening, not diagnostic, tests; more definitive tests follow positive screens, & pretest counseling is crucial. https://t.co/8JaG6ZeuWm

[EllenMatloff @EllenMatloff]

What the NYTimes Got Wrong On Prenatal Screening https://t.co/gGtEBh3omp

[orphanwriter @orphanwriter]

If you care about #rarediseases & #orphanproducts, join #NORD in urging #Senate leadership to remove #OrphanDrugTaxCredit provision from #BuildBackBetterAct. https://t.co/yh8pHqgDfi

[orphanwriter @orphanwriter]

"We cannot treat #rarediseases as luxury items where #diagnoses and #treatments are sparse and available only to a few or only the well-off." Great article from @genedocrare in The Hill. https://t.co/aLpBDo0e8q

[orphanwriter @orphanwriter]

@APSType1 Todd has done fantastic work for the #APS1 community over the years!