Deborah V. Requesens

Director Jumpstart Program at Orphan Disease Center
University of Pennsylvania

[Deborah V. Requesens @dvrequesens]

New great partnership between @sherusaoficial and @HECollaborative !

[Health Equity Collaborative @HECollaborative]

NEW BLOG by @dvrequesens: Rare diseases affect fewer than 200,000 people in the US, yet collectively impact 30+ million Americans.

@sherusaoficial is working on systemic change that benefits underserved populations in the #raredisease community.

https://t.co/LIVzzf2K1O

[Vicky Arteaga @VickyAArteaga]

@dvrequesens and I met 3 years ago at the first Health Equity Forum. We immediately recognized the need for a Hispanic Society for Rare Diseases, so we started SHER! Today we also celebrate the launch of our podcast in Spanish, Más Que Raras. @GlobalGenes @cureSYNGAP1

[BloodStream Media @BloodStrmMedia]

No te pierdas el primer episodio de Más Que Raras! Un podcast en español donde compartimos historias de la comunidad hispana en el mundo de las #enfermedadesraras. Un podcast para latinos, hecho por latinas. @dvrequesens @sherusaoficial

[The Orphan Disease Center @ UPenn @ODC_UPenn]

@dvrequesens, Our JumpStart Director, has a new podcast in Spanish about rare diseases and the Hispanic community. The first 2 episodes will come out on September 13th! You can find the Más De Raras podcast at apple podcasts!

https://t.co/VFBFevvLvK

[Vicky Arteaga @VickyAArteaga]

Happy to introduce you to our Spanish podcast of SHER with @dvrequesens about Rare Diseases and the Hispanic community MAS QUE RARAS. The first 2 episodes available on September 13th with the inspiring stories of Luisa Leal and Ana Gonzalez @ctnnb1cc https://t.co/AI1oZc0cih

[Deborah V. Requesens @dvrequesens]

@sherusaoficial

[Fundación Síndrome de Dravet @FundacionDravet]

Estudio en síndrome de #Dravet revela que los cuidadores experimentan problemas significativos de sueño, ansiedad y carga emocional. Es fundamental abordar el bienestar de los cuidadores en el manejo integral de esta enfermedad rara. #SaludMental

👉https://t.co/y0aDpW7Ef2

[UPenn Million Dollar Bike Ride by ODC @MDBRide4Rare]

40 days until we see you for the MDBR 2023 and ride for rare disease research! If you haven't already, register today! https://t.co/wVNY0lvtt9 #MDBR #MDBR2023 #pennmedmdbr2023 #raredisease #research

[Deborah V. Requesens @dvrequesens]

@sherusaoficial

[Fundación Síndrome de Dravet @FundacionDravet]

Hoy es el Día Mundial de las Personas sin Diagnóstico.

Todavía tenemos muchos pacientes con síndrome de Dravet que están sin diagnosticar o mal diagnosticados, lo cual conlleva unas consecuencias terribles. Por ello, es necesario seguir concienciando sobre el síndrome de Dravet.

[NCATS @ncats_nih_gov]

Don’t miss it! Dr. Elizabeth Ottinger, Acting Director of NCATS’ Therapeutic Development Branch, will be a panelist at the Rare Drug Development Symposium on May 1–3. Her session, “The Regulatory Landscape: Pathways, End Points & #ClinicalTrials,” will be on May 3 at 9:30 EDT.

[UPenn Million Dollar Bike Ride by ODC @MDBRide4Rare]

We hope to see you June 10th for our 10th annual Million Dollar Bike Ride! If you haven't registered yet, register today and support rare disease research! https://t.co/wVNY0lvtt9 #pennmedmdbr2023 #mdbr #raredisease #rarediseaseresearch #cycling

https://t.co/C29FYSPA6Y

[The Orphan Disease Center @ UPenn @ODC_UPenn]

SPEAKER ANNOUNCEMENT: We are pleased to share that the ODC's @dvrequesens
will be a speaker at the 1st Latin American Congress on Rare Diseases on March 16–17 in Bogotá, Colombia. https://t.co/PVoP9Kanik #latinamerica #rarediseases #RSVP #rarediseaseawareness #healthcarepolicy

[The Orphan Disease Center @ UPenn @ODC_UPenn]

It starts with loving parents @ZC4H2_ZARD #givingtuesday https://t.co/EPicoPWcl9

[Coriell Institute @Coriell_Science]

"I am so thankful for all of the work done here and for the friendship I have with Debbie because it's changing the lives of people who didn't have hope," @lukebrosen said.

[Coriell Institute @Coriell_Science]

"The work that Dr. Requesens and Coriell is doing is significantly changing the lives of my daughter and others like her," Rosen said.

[Coriell Institute @Coriell_Science]

"The first thing I talk about with families affected by #raredisease is cell lines," Dr. Requesens said. "I send them to the @NIGMS Repository because it's such a great resource."

[Coriell Institute @Coriell_Science]

Up next is Deborah Requesens, PhD, Director of the JumpStart Program at the University of Pennsylvania Orphan Disease Center, and @lukebrosen, founder of @KIF1A.

[Coriell Institute @Coriell_Science]

@lukebrosen "You'll get to a therapeutic faster if you utilize Coriell and this collection," said @lukebrosen. #raredisease #rarediseaseresearch

[The Orphan Disease Center @ UPenn @ODC_UPenn]

Vote for @christiangsoul tn on @AmericanIdol! Christian lives w/ a rare disorder called Leber congenital amaurosis, but he is unstoppable! He has made it to the top 24 of Season 20! Help us support Christian by voting tn at 8pm ET! https://t.co/YOzKJLysVp #TeamChristianAlltheWay

[The Orphan Disease Center @ UPenn @ODC_UPenn]

REMINDER! The ODC's Bloom Syndrome Grant Program Letters of Intent are due 4/15! This RFA is open to all academic scientists & commercial entities in the international research community Apply by Friday here: https://t.co/cQ73DUu7xF #bloomsyndrome #funding #rarediseaseresearch

[The Orphan Disease Center @ UPenn @ODC_UPenn]

Registration is officially open to attend the 2022 RARE Drug Development Symposium in Philly, PA! Limited space available. Details & registration can be found here https://t.co/Dw6KC1X2FO! #RDDS2022 #CareAboutRare #RareDisease #RareDrugDevelopment