Wendy Erler

Passionate about patient advocacy @AlexionPharma and those who are rare. Tweets/RTs are mine only.

[Wendy Erler @wendy_erler]

@JohnLeguizamo I’ve never DM’d anyone so I hope you get this. I ❤️ your show John Leguizamo Does America. Please profile Dr. Fabian Sandoval and @TTufamili. He’s won 4 Emmy’s and profiles health care for the community in a super cool way. #patientcentricity in a big way.

[Erin Moriarty Wade @EMoriartyWade]

“It’s important to remember the #caregivers and family members of a loved one with a rare disease. That person is also walking that same path.” — @wendy_erler on the #mentalhealth panel at @GlobalGenes #GGSummit22

[Wendy Erler @wendy_erler]

@EMoriartyWade @RareDiseaseDad @dfishervance @GlobalGenes What an honor to be part of such a meaningful and vulnerable discussion. This is the model for driving change! And anything that involves horses @EMoriartyWade

[Erin Moriarty Wade @EMoriartyWade]

Excellent panel on #mentalhealth with ⁦@RareDiseaseDad⁩ ⁦@wendy_erler⁩ Dr. Al Freedman ⁦@dfishervance⁩ and David Rintell at ⁦@GlobalGenes⁩ #GGSummit22

[Wendy Erler @wendy_erler]

@PeterKolchinsky Addressing more patients’ unmet needs

[John Novack @J2Novack]

"Building a Framework for Authentic Patient Centricity," new guest column by Wendy Erler of Alexion, AstraZeneca Rare Disease, for the Society for Participatory Medicine's e-Patients Blog https://t.co/BydalKgnRe HT @AlexionPharma @alexionpharmaus #clinicaltrials #RareDisease

[EUPATI @eupatients]

It is important that people participating in #clinical #trials truly represent the populations that scientific evidence shows are affected by the disease. Check out our #Toolbox article on 'Inclusion and Diversity in Clinical Trials' 🧐: https://t.co/TpJjFcqiAk
#Toolbox #EUPATI

[Amylyx @AmylyxPharma]

We are excited to share that we filed a New Drug Application (NDA) to the FDA for AMX0035 (PB/TURSO) for the treatment of #ALS. This submission represents a major milestone in our efforts to develop a potential new treatment option for the ALS community. https://t.co/G2rBCY5ZEF

[Soft Bones HPP @SoftBonesHPP]

Special thanks to our #WorldHPPDay sponsors for helping us spread awareness about HPP around the world and letting all our voices be heard.

[Wendy Erler @wendy_erler]

@ProfEdWild Ditto. Amazing person who personifies kindness and compassion.

[RARE-X @RARE_X_]

“Working with RARE-X, we’ll make it possible for rare disease communities to collect, utilize, and share their data to generate progress toward treatments,” said Craig Martin, CEO of @GlobalGenes. @healthrithms https://t.co/wRznSrbmPT

[Alexion Pharmaceuticals U.S. @AlexionPharmaUS]

Best of luck to Christine Rowe, Patient Advocacy, and Michaela Menard, Corporate Affairs, who are running today’s 125th #BostonMarathon!

[RARE-X @RARE_X_]

We are so proud to be working with the HCU community...#RareDisease #PatientData #RAREX #HCU

[Alexion Pharmaceuticals U.S. @AlexionPharmaUS]

Today is #WorldSightDay. Learn more about geographic atrophy (GA), a chronic & progressive eye disease that causes degeneration of the portion of the retina responsible for central and color vision, and a major cause of blindness. https://t.co/0pjOy6xeho #rarescience

[RARE-X @RARE_X_]

RARE-X Guiding Principle #1 - RARE-X will ensure patient data contributors OWN and MANAGE the use and access of their data, enabled through governance, consent, and technology. #RareDisease #PatientData #OwnIt https://t.co/2aVR7Tgqoa

[Soft Bones HPP @SoftBonesHPP]

Please join us for our second Soft Bones ECHO Program, a telementoring series to connect and educate healthcare professionals about #hypophosphatasia. Physicians or researchers interested in registering should email [email protected]. #softbonesHPP

[Neal Katyal @neal_katyal]

Justice Sotomayor, just now: "The Court’s order is stunning. Presented with an application to enjoin a flagrantly unconstitutional law engineered to prohibit women from exercising their constitutional rights ... a majority of Justices have opted to bury their heads in the sand."

[World Duchenne Organization @worldduchenne]

In March, 120 participants from 22 countries discussed how they could drive FAIR data efforts to facilitate research and healthcare 📊👩‍⚕️
→ The report is now available
#DuchenneFAIR #Duchenne #FAIRdata #HealthTech
https://t.co/RfLOsIA3Qb

[Wendy Erler @wendy_erler]

@GlobalGenes Excited to support this amazing work focused on CNS rare disorders!

[Global Genes @GlobalGenes]

Virtual registration for the 2021 RARE Patient Advocacy Summit is open!

You don't want to miss out on our annual event that convenes everyone across the #raredisease community. Everyone can find their place at the #GGSummit.

Register at https://t.co/U7bAR6CVXJ