@pheopara.bsky.social💙 Scanxiety is real. You're not alone.
Waiting for scans or results can be overwhelming for people living with PPGL.
Jonathan Pascual, NP, shares 3 practical strategies for managing scanxiety. ▶️ Watch his video!
💬 What helps you cope?
@pheopara.bsky.social💚 Step Five Matters: You Don't Have to Do This Alone.
Living with PPGL? Pheo Para Alliance offers peer support, trusted resources, and patient navigation to help you move forward.
🤝 Find your community:
pheopara.org/community/re...
@pheopara.bsky.socialNewly diagnosed with pheochromocytoma or paraganglioma (PPGL)? 💚 You don't have to navigate it alone.
Pheo Para Alliance offers patient guides in English, Spanish & French, plus peer support and patient navigation.
Find support: pheopara.org/community/resources
@pheopara.bsky.social💚 Your time. Your voice. Your impact.
Pheo Para Alliance is looking for volunteers to support the PPGL community through Peer Navigation, advocacy & our Gratitude Team.
Interested? Join us:
zeffy.com/en-US/ticketing/volunteer-with-the-pheo-para-alliance
@pheopara.bsky.social💚 Introducing The Pheo Para Navigator, our new newsletter!
Explore updates, resources, community news, and insights for the PPGL community in our first edition.
@pheopara.bsky.socialBe a Force for Good. 💚
Jonathan Pascual turned his experience living with metastatic paraganglioma into action through JP’s Backyard Ultra.
Together, this incredible community generated $100,000+ in donations and in-kind support for the PPGL community.
@pheopara.bsky.social💚 An unforgettable evening of hope, generosity & community.
The Circle of Hope Gala brought our community together in support of Pheo Para Alliance, celebrating inspiring stories and extraordinary generosity.
Thank you to everyone who made it possible. 💚
@pheopara.bsky.social🧬 National Hereditary Cancer Week
Genetic testing may help people with PPGL understand inherited risk and guide care for themselves and their families.
Talk with your healthcare team or a genetic counselor about whether testing is right for you.
@pheopara.bsky.social❤️ Heart Health Day
For people with functional PPGL, elevated catecholamines can affect more than blood pressure—they may also stress the heart.
Talk with your healthcare team about monitoring your cardiovascular health. ❤️
#PPGL #PheoParaAlliance #HeartHealth
@pheopara.bsky.social💚 You don’t have to navigate the PPGL journey alone.
Join our Peer Support Meeting to connect with people who understand.
📅 Oct. 6
🕠 5:30 PM PT | 6:30 MT | 7:30 CT | 8:30 ET
#PPGL #PeerSupport
@pheopara.bsky.social💚 Peer Support Meeting — Tomorrow!
You don’t have to navigate the PPGL journey alone. Connect with others who understand, share experiences, and find support.
🕘 9 AM PT | 10 AM MT | 11 AM CT | 12 PM ET
🔗 Register through the link in our bio.
@pheopara.bsky.socialOn #RareCancerDay, we’re raising awareness of pheochromocytoma and paraganglioma (PPGL). 💚
Share this post to help make rare cancers like PPGL more visible.
@pheopara.bsky.socialOn #RareCancerDay, we stand with everyone affected by rare cancers and the PPGL community working toward better answers, knowledgeable care, stronger support, and greater awareness.
Together, we can make rare more visible.
#PheoParaAlliance #PPGL #RareCancer #Pheochromocytoma #Paraganglioma
@pheopara.bsky.social💚 Join us September 24 for our Bi-Monthly Support Meeting—a space for the PPGL community to connect, share experiences, and support one another.
🕘 9 AM PT / 12 PM ET
Register:
www.zeffy.com/en-US/ticket...
@pheopara.bsky.social💚 What does hope mean to you?
This Saturday at the Circle of Hope Gala, we’re creating a Pheo Para Hope Wall featuring messages from our community.
💬 Tell us what hope means to you, and we’ll add your message to the wall.
@pheopara.bsky.social🔬 PPGL Scientific Forum — September 15, 2026
Research, progress and hope for the pheochromocytoma and paraganglioma community. 💚
@pheopara.bsky.social💚 Our Caregiver Support Meeting is tomorrow!
Join fellow caregivers for a supportive space to connect and support one another.
📅 Monday, September 14
🔗 Register:
www.zeffy.com/en-US/ticket...
@pheopara.bsky.social10 days until the Circle of Hope Gala! 🧡
Join the Pheo Para Alliance community in Boston on September 19 for an evening of hope, connection, and impact.
🎟️ Tickets:
www.zeffy.com/en-US/ticket...
@pheopara.bsky.social🏁 Missed a Pheo Para Awareness Week webinar?
The recordings are now available on demand. Catch up on educational sessions and expert resources on Pheo Para.
🎥 Watch: pheopara.org/clinicians/v...
@pheopara.bsky.socialClinical trials aren’t just a “last resort.” They exist across different stages of disease.
Jonathan Pascal, NP and PPGL patient, explains clinical trial phases and how patients can explore their options.
🔬 Learn more: pheopara.org/find-clinical-trials