Pheo Para Alliance

@PheoPara

Investing in research and supporting #pheochromocytoma and #paraganglioma patients globally. "Stronger United" #NETCancer #RareDisease #pheo #para

Joined October 2016

662Following

2KFollowers

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Pheo Para Alliance@PheoPara · Jul 21

Thanks for your questions & interest in this #RareDisease! Any #pheo #para #PPGL experts want to join the discussion? @TheAACE @TheAAES @TheEndoSociety @Soc_Endo @Endocrine_CNIO @NADF_Adrenal @HemOncFellows @ASCO @ESEndocrinology @EYEScientists @LMFendo @IrinaBancos @JudithFavier

RRaffaele Di Giacomo, PhD@sciqst · Jul 18

The work being done in the field of paraganglioma and pheochromocytomas is indeed promising. Understanding the mechanisms of pathogenesis, metabolism, and the tumor microenvironment is critical in developing effective therapies. I'm curious about what new insights were shared…

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Pheo Para Alliance@PheoPara · Jul 17

Thrilled to see #pheo #para #PPGL featured at #ENDO2025! 🙌 We ❤️ the #endocrinology #adrenal experts for helping with our mission to raise awareness about this #RareDisease. @TheEndoSociety @LMFendo @JudithFavier @DrGaryHammer

EEuropean Network for the Study of Adrenal Tumours@ENSAT_news · Jul 16

Well done everyone! @TheEndoSociety #ENDO2025 #phaeochromocytoma #PPGL 👏

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Pheo Para Alliance@PheoPara · Jul 17

📢Primary care providers & others who many encounter #pheo #para #PPGL - brush up on your #NETs knowledge & get free CME credit! 🧐 @TheAACE @TheAAES @TheEndoSociety @Soc_Endo @aafp @PedsEndoSociety @SocietyGIM @ACPinternists @NADF_Adrenal @HemOncFellows

NNET Cancer Day@netcancerday · Jul 17

We know that #PrimaryCarePhysicians are very busy. 👉We know that if they learn to #ThinkNENs, many NEN patients will be diagnosed early and lives will be saved. 📌Get proficient in NENs in only 60 minutes with a free CME credit in your language: incalliance.org/think-nens/…

Pheo Para Alliance@PheoPara · Jul 21

Join us on Thursday, July 31st, as we share & connect about our #pheo #para #PPGL journey in a meeting led by patients just like you. Everyone will have an opportunity to introduce themselves & share.⁠ 🫂 Register 👉pheopara.org/2025/05/bi-mon… @RareDiseases @NCFCancer @HealingNET1

PheoPara's tweet image. Join us on Thursday, July 31st, as we share &amp; connect about our #pheo #para #PPGL journey in a meeting led by patients just like you. Everyone will have an opportunity to introduce themselves &amp; share.⁠ 🫂
Register 👉pheopara.org/2025/05/bi-mon…
@RareDiseases @NCFCancer @HealingNET1

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Pheo Para Alliance@PheoPara · Jul 25

What a useful & crucial endeavor! Excellent mentorship grows the medical profession. Your #pheo #para #PPGL #PHriends thank you for looking ahead to the future of #endocrinology! 👏 @IrinaBancos @DavidToroT @santoans @eClinicalMed

LLjiljana Marina@LjiljanaMarina · Jul 24

Happy to have had the chance to collaborate with @IrinaBancos and David on this important project! 🙌 Tailoring mentorship to regional training contexts may optimise academic productivity, training satisfaction, and overall well-being @santoans @eClinicalMed 🧵1/5

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Pheo Para Alliance@PheoPara · Jul 25

Just ask anyone with #pheo #para #paraganglioma. Once those adrenal hormones (adrenaline & noradrenaline) start flowing . . . Oh boy, anything can happen! 💣🤯🧨#NETs

NNeuroendocrine Cancer@Neuroendocrine · Jul 25

Living with NETs - nobody said it was easy buff.ly/aTLsiC0

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NET Research Foundation@CureNETs · Jul 25

Submit questions for Know Your NETs, our largest patient/caregiver conference tomorrow! Use slido.com with code "NETRF" to ask anonymously. Not registered? Join us online at 11 AM ET: netrf.org/for-patients/2… #neuoendocrinecancer #NETs #NECs #cancerresearch

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Pheo Para Alliance@PheoPara · Jul 25

A #PHabulous @netcancerday resource on #PRRT (radioligand therapy)--& available in many languages. Thanks for creating such helpful info for the #NETs community, including #pheo #para #PPGL. 👏👏👏 👉 incalliance.org/netinfo-rlt-co…

PheoPara's tweet image. A #PHabulous @netcancerday resource on #PRRT (radioligand therapy)--&amp; available in many languages. Thanks for creating such helpful info for the #NETs community, including #pheo #para #PPGL. 👏👏👏
👉 incalliance.org/netinfo-rlt-co…

Pheo Para Alliance@PheoPara · Jul 25

Matthew's #PHriends taking positive action in response to his devastating death from #paraganglioma. ❤️ We extend our deepest condolences to all who love Matthew. 🫂 #pheo #PPGL #RareDisease uk.news.yahoo.com/friends-tackle…

PheoPara's tweet card. Matthew Adams, 18, from Tynemouth, died on May 23 following a two-and-a-half-year fight with a rare form of cancer.

Pheo Para Alliance@PheoPara · Jul 21

📢Sat, Sept 20, 2025 in Montreal 🇨🇦. Free for anyone affected by #pheo #para #PPGL. Co-hosted by @CNETSCanada & PPA in collaboration with the ISP. 🌎🌍🌏experts will present cutting-edge info on diagnosis, management, treatment, genetics & more.

PheoPara's tweet image. 📢Sat, Sept 20, 2025 in Montreal 🇨🇦. Free for anyone affected by #pheo #para #PPGL. Co-hosted by @CNETSCanada &amp; PPA in collaboration with the ISP.
🌎🌍🌏experts will present cutting-edge info on diagnosis, management, treatment, genetics &amp; more.

Pheo Para Alliance@PheoPara · Jul 21

After learning more about PPA, JP has generously chosen us as the beneficiary of his Backyard Ultra 2025. 👟Details: pheopara.org/2025/05/jps-ba… *DISCLAIMER: Please consult with your medical team before participating in physical activity.

PheoPara's tweet image. After learning more about PPA, JP has generously chosen us as the beneficiary of his Backyard Ultra 2025.
👟Details: pheopara.org/2025/05/jps-ba…
*DISCLAIMER: Please consult with your medical team before participating in physical activity.

Pheo Para Alliance@PheoPara · Jul 9

Thanks @Bham_AT for the repost! This should be a #pheo #para #PPGL #PHabulous conference in Montreal. 🇨🇦 Details 👉bit.ly/4ngCxcF @TheAACE @TheAAES @TheEndoSociety @Soc_Endo @Endocrine_CNIO @PedsEndoSociety @NADF_Adrenal @HemOncFellows

PPheo Para Alliance@PheoPara · Jun 26

The world's foremost experts in #pheo #para #PPGL disease will assemble in Montreal 🇨🇦 to share the latest in the field. Hope you can join! Details 👉bit.ly/4ngCxcF @TheAACE @TheAAES @TheEndoSociety @Soc_Endo @Endocrine_CNIO @PedsEndoSociety @NADF_Adrenal @HemOncFellows

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Katja Kiseljak-Vassiliades@Katja_K_Vassi · Jul 15

Pheo/para research - “we are a small group but strong” - ⁦@LMFendo⁩ presenting exciting new pheo/para research ⁦@TheEndoSociety⁩ ⁦@CUEndocrinology⁩ ⁦@PheoPara⁩ #ENDO2025

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NANETS@NANETS1 · Jul 17

Looking for trusted resources on neuroendocrine tumor (NET) care? NANETS offers a comprehensive list of tools. Explore resources now: nanets.net/resources/prov… #NETCare #ProviderResources #NeuroendocrineTumors #MedicalEducation #NANETS

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Pheo Para Alliance@PheoPara · Jul 17

Outstanding work on behalf of those affected by #pheo #para #PPGL disease.🙌 Knowing there are investigators like Drs. Ghayee, Favier & Fishbein who take an interest in this #RareDisease provides hope to so many. 🔬❤️ @CUEndocrinology @CUDeptMedicine @JudithFavier @TheEndoSociety

LLauren Fishbein@LMFendo · Jul 15

Happy to share the podium with fabulous colleagues in #PPGL Dr Hans Ghayee & Dr Judith Favier. Great to hear their new work in metabolomics & microenvironment. & happy to share our PPGL genetic modifier results. @CUEndocrinology @CUDeptMedicine @TheEndoSociety #ENDO2025

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Pheo Para Alliance@PheoPara · Jul 17

#pheo #para #PPGL investigators 🔬-- mark your calendars! 🖊️🗓️ Wheels already turning for #ENDO2026. 🙌 @TheEndoSociety #ENDO2025 @TheAACE @TheAAES @Soc_Endo @Endocrine_CNIO @NADF_Adrenal @HemOncFellows

EEndoMedia@EndoMedia · Jul 15

Thanks for a wonderful #ENDO2025! We will see you in Chicago for #ENDO2026. @TheEndoSociety

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Endocrine Society@TheEndoSociety · Jul 16

Advocacy in Action | We want to thank everyone who stopped by our ENDO 2025 booth to become an Advocacy Champion or to show their continued support for our policy priorities (bit.ly/2TRULVc). Read more: bit.ly/2XKNMkH #ENDO2025 #endocrinology

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European Society of Endocrinology (ESE)@ESEndocrinology · Jul 17

Survey deadline extended to 30 SEPTEMBER 2025 The endocrine workforce is not being developed and equipped to cope with the challenges we are facing. Your response will inform national and regional policy actions – have your say! 👇🚨research.net/r/State_of_End…

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Pheo Para Alliance@PheoPara · Jul 17

Thank you for sharing this work. We are grateful to the investigators who are providing hope for those affected by #pheo #para #PPGL. 🙌🔬❤️ @LMFendo @JudithFavier @TheEndoSociety #ENDO2025

GGary D Hammer, MDPhD@DrGaryHammer · Jul 15

What a great ADRENAL symposium to help close out @TheEndoSociety #Endo2025. Pathogenesis, Metabolism and the Microenvironment in Paraganglioma-Pheochromocytomas. Hans Ghayee, @LMFendo & @JudithFavier Leading the way with emerging biology and future therapies

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