PPALS @PPALSorg
(PPALS) is a non-profit organization committed to supporting the function of Patient Advocacy within the biotech and pharmaceutical industries. PPALS.org Joined April 2017-
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Thank you to our own Austin Letcher for your presentation at PPALS! It is an honor to meet and collaborate others passionate about rare disease advocacy! @PPALSorg @amicusrx1
#PPALSPACT2023 @PPALSorg case study discussion with PAOs, biotech & pharma attendees. Lots of good conversations @SanfordCoRDS @jgersh1115 @bwuebbels @DMLaGreca @RobertTomaino
#PPALSPACT2023 @SanfordBenF speaking to Industry Intermediate class at Day 2 of @PPALSorg PACT course at @SanfordResearch Great discussion on appropriate interactions with #rarediseasepatientadvocacyorganizations @BarbWuebbels @jgersh1115 @DMLaGreca
#PPALSPACT2023 @DrDavidPearce discussion on @SanfordResearch on Day 1 of @PPALSorg PACT course. @RobertTomaino @SanfordCoRDS @jgersh1115 @DMLaGreca @BarbWuebbels #patientadvocacyinlifesciences
@PPALSorg is pleased to announce the return of PPALS Presents! The next installment of the webinar series will feature a discussion about the best “Pathways for Seeking Community Insights.” Join us online Thursday, March 30th at 4pm (EST) #patientadvocacy mailchi.mp/197ba24167e3/p…
@PPALSorg and @SanfordResearch are pleased to announce that the registration link for the 2023 Patient Advocacy Certificate Training (PACT) course is live! The course will take place at Sanford Research Institute campus in person from May 8th-11th. mailchi.mp/acffb490b877/r…]
PPALS November Newsletter mailchi.mp/7bdc18060c8e/p… #patientadvocacy #patientadvocate
Mark Sept 27 for a must attend @_OurOdyssey_ special topic meetup. Thanks @Srotberg15 for being on the program! @PPALSorg @SanfordCoRDS @RobertTomaino @HDYOFeed @EveryLifeOrg @RareAdvocates @CystinosisCRN @livinlavidalopo @One_Rare_ @UpliftingAth #RareDisease #chronicillness
Don't miss: Seth Rotberg patient advocate & Co-Founder of Our Odyssey will be guest speaker on Sept. 27th at 5:30 pm ET, "Empowering Yourself and Others as a Patient Advocate" for those impacted by a rare or chronic condition ourodyssey.org/topic-specific… #RareDisease #chronicillness
Thanks Keri McDonough from @SyneosHealth for the @PPALSorg shoutout in her view of @DynamicGlobalEv Chief Patient Officer summit which took place in July. Not only did it feature several PPALS members and PACT faculty, but the meeting was focused on #PatientAdvocacy!
Don't miss: Seth Rotberg patient advocate & Co-Founder of Our Odyssey will be guest speaker on Sept. 27th at 5:30 pm ET, "Empowering Yourself and Others as a Patient Advocate" for those impacted by a rare or chronic condition ourodyssey.org/topic-specific… #RareDisease #chronicillness
Young adults (18-35) impacted by rare or chronic conditions 👉Join us! @_OurOdyssey_ hosts free virtual meetups! The next one is Sunday August 28th 4 - 5pm EST Learn more & sign up here: ourodyssey.org/virtual-meet-u…… #RareDisease #chronicillness
Lots of learning, connecting and wonderful discussions were had at #PACT2022. Thank you @PPALSorg & @SanfordCoRDS for a great week!
"I am so glad we had this time together!" A fabulous group of Patient Advocates at the end of the @SanfordCoRDS @PPALSorg #PACT2022 Great energy & discussions! Thank you to all for a stellar experience! @jgersh1115 @BarbWuebbels @RobertTomaino @SanfordBenF
It's @michelerhee between 2 Robs @RobertTomaino & @RobLong47 moderating Findi g the Common Ground for @SanfordCoRDS @PPALSorg #PACT2022 Really good conversation! @UpliftingAth @jgersh1115 @BarbWuebbels @DMLaGreca Thanks for your enthusiasm!
Thank you Sanford/PPALS #PACT2022 Attendees and Faculty. It was a great week of discussions and learning from each other! Go forth and Collaborate! #patientadvocacyinlifesciences #patientadvocacy @PPALSorg @SanfordCoRDS @jgersh1115 @BarbWuebbels @JFCConsultants #PACT2022
@michelerhee leading #patientadvocacyinlifesciences w/ colleagues working in #patientadvocacy function about challenges! @PPALSorg @SanfordCoRDS @jgersh1115 @BarbWuebbels Great conversation!!!
Thanks @JFCConsultants and Rob Long @UpliftingAth sharing the best practices of working with Non Profit Organizations @SanfordCoRDS @PPALSorg @jgersh1115 @BarbWuebbels @teaminspire @RobertTomaino #rarediseases #patientadvocacyinlifesciences #PACT2022 #PPALS
Thanks Rob Long @UpliftingAth sharing how they work with Industry, PAOs and other stakeholders. @SanfordCoRDS @PPALSorg @jgersh1115 @BarbWuebbels @teaminspire @RobertTomaino @DMLaGreca #rarediseases #patientadvocacyinlifesciences #PACT2022
Day 3 at @SanfordCoRDS @PPALSorg #PACT2022 Discussions on Working with Non-Profits, CSuite, Collaboration with Academia, Nonprofit, Industry & Government, and Finding Our Common Ground. @jgersh1115 @BarbWuebbels @RobertTomaino IT HAS BEEN TERRIFIC!!
Thanks Jamie Ring for the History of Patient Advocacy at @SanfordCoRDS @PPALSorg #PACT2022 It was indepth, intriguing & Informative. Having historical perspective gives a stronger base for the #patientadvocacyinlifesciences function. @jgersh1115 @BarbWuebbels @BarbWuebbels
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572 Followers 817 Following Mom of 4. Batten disease & rare disease advocate 💙💜 Loyola Chicago & John Felice Rome Center alum
Terri Klein @terrilklein
296 Followers 231 Following President and CEO of the National MPS Society. Working to provide hope and support to families for treatment and cures of MPS and ML. https://t.co/rVZEotEtPQ
Benjamin Forred @SanfordBenF
382 Followers 132 Following #Science Enthusiast. #Biomed Researcher and Director of #Genetics & #Genomics and the @SanfordCoRDS #Registry at @sanfordresearch. #RareDisease #research





