Share Your Voice
Sharing our personal stories doesn’t just help other patients; it gives medical professionals the insights they need to provide better care for those with Pheochromocytoma and Paraganglioma.
Join the SCOPPE 2.0 Survey today. This follow-up study is designed to help the Pheo Para Alliance Research Advisory Board deeply understand our quality of life.
⏱️ Time is of the essence! The survey closes June 16th.
How to help:
1️⃣ Click on the link in the bio to take the survey!
2️⃣ Share this post with your fellow warriors!
#PheoPara #PPGL #PatientVoice #ResearchMatters
Share Your Voice
Sharing our personal stories doesn’t just help other patients; it gives medical professionals the insights they need to provide better care for those with Pheochromocytoma and Paraganglioma.
Join the SCOPPE 2.0 Survey today. This follow-up study is designed to help the Pheo Para Alliance Research Advisory Board deeply understand our quality of life.
⏱️ Time is of the essence! The survey closes June 16th.
How to help:
1️⃣ Click on the link in the bio to take the survey!
2️⃣ Share this post with your fellow warriors!
#PheoPara #PPGL #PatientVoice #ResearchMatters
Our monthly caregiver support meeting is happening TODAY, Monday, May 11th, at 4pm PST/7pm ET. It's not too late to register--please join us if you are able to!
Our caregivers show up for us every day. We want to show up for them and provide a circle of support for those who give so much.
Like our patients, our caregivers are not alone on this journey. Click on the link in the bio to register!
#caregiversupport #pheochromocytoma #paraganglioma #caregivers
Our monthly caregiver support meeting is happening TOMORROW, Monday, May 11th, at 4pm PST/7pm ET. Please join us if you are able to!
Our caregivers show up for us every day. We want to show up for them and provide a circle of support for those who give so much.
Like our patients, our caregivers are not alone on this journey. Click on the link in the bio to register!
#caregiversupport #pheochromocytoma #paraganglioma #caregivers
Happy Mother's Day to all of our wonderful moms!
We hope that today was a day filled with love, joy, and celebration!
Lots of love and appreciation from the team here at the PPA!
#HappyMothersDay #nonprofit #pheo #para
We’re excited to share the latest edition of PPA's newsletter!
This issue includes updates on our recent work, highlights from across the PPA, and a special welcome to new team members: Bethel Stevens (Board of Directors), Nejla Abbed (Board of Directors), Stephen Furlong (Board of Directors & Research Advisory Board), Denise Samocki (new Patient Engagement Committee Chair), and Jen Marchetti (Program Manager). We’re thrilled to have such amazing people join us in supporting our mission and future growth!
Read the full newsletter using the link in the bio!
#Nonprofit #CommunityImpact #pheo #para
Our monthly caregiver support meeting is happening THIS Monday, May 11th, at 4pm PST/7pm ET. Please join us if you are able to!
Our caregivers show up for us every day. We want to show up for them and provide a circle of support for those who give so much.
Like our patients, our caregivers are not alone on this journey. Click on the link in the bio to register!
#caregiversupport #pheochromocytoma #paraganglioma #caregivers
Share Your Voice
Sharing our personal stories doesn’t just help other patients; it gives medical professionals the insights they need to provide better care for those with Pheochromocytoma and Paraganglioma.
Join the SCOPPE 2.0 Survey today. This follow-up study is designed to help the Pheo Para Alliance Research Advisory Board deeply understand our quality of life.
⏱️ Time is of the essence! The survey closes June 16th.
How to help:
1️⃣ Click on the link in the bio to take the survey!
2️⃣ Share this post with your fellow warriors!
#PheoPara #PPGL #PatientVoice #ResearchMatters
May the 4th be with you! In every galaxy, there are battles worth fighting. Today, stand with our community.
🔬 Support research
📣 Share awareness
🤝 Advocate for patients
#MayThe4thBeWithYou #FightRareDisease #PPGL #StrongerTogether
⏰️ Join us today at 12pm PST/3pm ET to support Sherry's dissertation! ⏰️
The Pheo Para Alliance is committed to advancing support, awareness, and progress for individuals and families affected by pheochromocytoma and paraganglioma (PPGL).
Sherry Zhou, an MD–PhD candidate at Mayo Clinic, will defend her dissertation focused on the molecular drivers of SDH-related PPGL.
If you are able to, please also consider making a donation to Sherry's fundraiser! She has chosen to use her dissertation not just as a personal achievement, but as an opportunity to give back.
Sherry is dedicating her fundraiser in honor of and in gratitude of the mentorship that she has received from her PI, Dr. Jim Maher, who himself is a paraganglioma patient and survivor.
Click on the link in the bio for more information, to donate, and to register for Sherry's dissertation!
#pheochromocytoma #paraganglioma #fundraiser #dissertation #phd
Happy #VolunteerAppreciation!
We would like to bring special attention and recognition to Ann Licker, a PPA patient, caregiver, and advocate. Ann recently participated in the Rare Endocrine Disease Fellows Program hosted by the Endocrine Society.
Her participation was supported by the National Organization for Rare Disorders (NORD) and the Endocrine Society—an important effort to ensure the patient voice is represented in medical education.
Ann spoke about living with PPGL (pheochromocytoma and paraganglioma), rare neuroendocrine tumors arising from adrenal or extra-adrenal tissue that can significantly impact cardiovascular and overall health.
Her insights were a powerful reminder of the importance of integrating lived experience into how we educate and care for patients.
#RareDisease #PatientAdvocacy #Endocrinology #MedicalEducation #PPGL #PPGLPhearless #pheochromocytoma #paraganglioma
In honor of Volunteer Appreciation Week, we’re taking a moment not only to thank our incredible volunteers who give so much of themselves to support others, but also to send our heartfelt well wishes to someone who has given back in a big way. 💙
We would like to wish Chad Gilbert of New Found Glory a smooth and steady recovery from his recent surgery. Chad and his bandmates have been such meaningful supporters of The Pheo Para Alliance, helping raise vital awareness and funding for those affected.
We’re especially grateful for Chad and are wishing him strength, rest, and a full recovery. We hope to see him back on tour with his bandmates again soon, doing what he loves!
