Patient Advocacy Strategies
@PatientAdvStratCrafting Engagement Strategies with Life Science Orgs, Patient Adv Groups & other Stakeholders to Advance Health.
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@RareAdvocates
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Middlemen drive up out-of-pocket costs for patients, profiting off of fees and rebates tied to the price of medicines. And even though PBMs receive billions in rebates and discounts that reduce the cost of brand name drugs, they still force patients to pay the full price. They…
Save the date this November 9-10 for the first-ever IgG4ward! Jamboree (The JAM). This event will be located in McLean, VA and will unite members of the #IgG4RD community. As we're planning the event, we ask you fill out this survey: igg4ward.org/jam-rsvp/
Thrilled to launch our new website!Check it out and reach out to us to learn how we support #lifescience #innovation w/#authentic #patientenengagement About – Patient Advocacy Strategies patientadvocacystrategies.com/about/
We're answering your IgG4-RD questions on Friday, May 31, from 9 – 10:30 A.M. EST! Register for our upcoming IgG4-RD Q&A Fireside Chat hosted by IgG4ward! Founder Dr. John Stone and IgG4ward! Director of Patient Advocacy Katharine Provencher here: rb.gy/0pxzyp
Are you a breast cancer or melanoma patient who has participated in a clinical trial and interested in sharing your story with a biotech company? Please reach out to addison@patientadvocacystrategies.com to learn more about this paid opportunity to share your story.
Attn. cholesterol patients in MA currently on PCSK9 inhibitors: We're working w/patients to share input to insurance companies to protect patient access. If you are a patient interested in voicing your support, please reach out to addison@patientadvocacystrategies.com
Actually if something is very rare, you may need to spend more effort advertising because it’s, well, rare. That I can understand. There are entire companies devoted to rare disease clinical trial recruitment.
"With great excitement today at the Symposium, I announced an important goal of the IgG4ward! Foundation: to make April 4th - the fourth day of the fourth month - recognized internationally as IgG4-RD Awareness Day." – Dr. John Stone Learn more: shorturl.at/bPSW7 #IgG4RD
SoldierStrong Ambassador and SoldierSuit recipient Sgt Dan Rose had this to say about the exoskeleton used to help paralyzed veterans walk again⬇️ "The first time I stood up and looked across the room, it was like reaching the summit of a mountain and looking down on the world."
Yes, there are indeed! patientadvocacystrategies.com
Actually if something is very rare, you may need to spend more effort advertising because it’s, well, rare. That I can understand. There are entire companies devoted to rare disease clinical trial recruitment.
@SenManchinComms @POLITICOLive Health Summit speaking about prescription drug prices “were not gonna score a touchdown on every play”
MaaT Pharma (@MaaT_Pharma) indicates completion of Patient Recruitment for the Phase 2a Clinical Trial Evaluating MaaT013 in Metastatic #Melanoma - ow.ly/KruX50QLSwe #rarediseases #orphandrugs
"It's not theoretical to John. He really understands what this industry needs..." Former Interim CEO Rachel King talks about the impact John Crowley will have in his new role as BIO’s CEO.
PBMs replacing big pharma as the punching bag on #drugpricing. Good for patients and good for biotech endpts.com/ftcs-lina-khan… ht @matthewherper $XBI
In recognition of #RareDiseaseDay, we’d like to highlight a story from IgG4-RD patient, Andy Provencher. Andy, who was officially diagnosed with IgG4-RD in 2021, shares his story to diagnosis: shorturl.at/mFUX4 #lightupforrare #RareDiseaseDay2024 #RareDiseaseAwareness
Who is ready to get their "advocacy fire reignited" next month? 🔥🙋♀️🙋♂️ #RareDC2024 is happening on February 25-28. Learn about policy proposals impacting the rare disease community and share your story with your Members of Congress! Come join us! rareadvocates.org/rdw
2024 should be the year members of Congress come together to make #PBMreforms a reality. @RepAnnieKuster @RepChrisPappas @SenatorHassan @SenatorShaheen ow.ly/3SSX50QtfrU
Thank you @BridgeBioPharma for this opportunity and for your dedication to the #RareDisease community. Go subscribe to OnRare and have a listen 💟💟
In our latest episode of #OnRare we speak with Effie Parks, a rare mom, a patient advocate, a podcaster & host of @OnceUponaGene Effie candidly shares her experience of being a mom to a child with a rare condition and her journey into the advocacy space. bit.ly/47H0S2q
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Who to follow
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RDLA
@RareAdvocates -
Remember The Girls
@remember_girls -
Seth Rotberg
@Srotberg15 -
Rare Disease Ghana Initiative
@RareDiseaseGh -
The Hearing Journal
@HearingJournal -
Melanoma Research Foundation
@CureMelanoma -
RareNewEngland
@RareNewEngland -
David Ross
@mensraredisease -
WeHealth
@WeHealthNews -
Ken Taylor
@KenRayTaylor -
Danny's Dose
@dannys_dose -
Patients 4 Change
@Pts4Chg -
Erythromelalgia
@EM_Warriors
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