Message from Incoming BOD Chair, Linda Rose-Krasnor
My name is Linda Rose-Krasnor and I am honored to serve as the incoming Chair of the Board of Directors of the Pheo Para Alliance. I live in southern Ontario, Canada, and have been a member of the Board for the past two years, serving most of that time as its secretary.
The mission of the Pheo Para Alliance is to empower patients, their families, and medical professionals through advocacy, education and a global community of support, while helping to advance research that accelerates treatments and cures. These Alliance goals address serious needs in the pheo para community. They also are important to me on a personal level, given that I am a paraganglioma patient myself, with an SDHD genetic mutation that I share with several close family members.
Pheochromocytoma and paraganglioma comprise a rare set of diseases. The general public, primary care physicians, and even many medical specialists have little awareness of these conditions. Disease-specific information and resources are hard to find. Delayed and misdiagnoses are common and patients frequently tell us their medical professionals are unfamiliar with their illness and even do not believe them when they report their symptoms.
As one of our pheo para patients reported:
 “It’s so rare, no one believes it, so I had to do all my own research and fight to get tests.”
And another commented:
“When I found out I had a glomus jugular tumor, I didn't know who to talk to. Nobody had heard about this type of tumor, not even my doctors. I felt so alone.”
The Alliance’s successes in patient education and advocacy, access to medical care, and fundraising are largely due to our two dynamic and resourceful staff, Stephanie Alband, our Executive Director, and Aimee Powell, our Community Engagement Specialist.
I also am fortunate to be working with a talented and committed Board of Directors. Special thanks to Eli Soto, outgoing Chair, for his service during a time of transition for Pheo Para Alliance. His leadership has allowed me to assume the Chair position at a time when the organization has reached great credibility amongst our constituents. We are fortunate that Eli has agreed to serve another term on the Board as a Member. 

Finally, our mission is supported by the members of our expert and diverse Medical Advisory Board and a handful of other very dedicated committees, who generously give of their time and knowledge.
In 2023, we will work together to continue promoting education about pheos and paras, increasing access to expert and specialized medical care through our Center of Excellence program, enhance our peer support activities, and promote research into this rare condition. We also look forward to building our relationship with other patient advocacy organizations and industry partners.
We invite you to accompany us on this journey, as a volunteer, donor, and/or participant in our activities. We also welcome you to explore the resources on our website, sign up to receive information about upcoming events, and contact us if you would like to connect with our peer support network. We would be very happy to hear from you.
We wish you all the best for the coming year and beyond. You can reach me at [email protected] with any questions or concerns.
Thank you.
Linda Rose-Krasnor
Chair, Board of Directors
Pheo Para Alliance
Welcome Phriend!
Dr. Jaydira Del Rivero Joins the Medical Advisory Board
Dr. Del Rivero is a Physician Scientist in the Developmental Therapeutics Branch of the NCI at the NIH. She is the Principal Investigator of the Natural History Study for Neuroendocrine Neoplasm and Adrenocortical Cancer to provide the basis for further development of therapeutic interventions, prevention/screening guidelines, endpoints for future clinical trials.

With PPA, she has participated in our Virtual Patient Conference and the Portland Regional Conference last year. Read Dr. Del Rivero's full bio at the link below.
IDEA Mixer, January 26 - Join Us!
Access to care, education, and support for all patients remains an enduring priority. To ensure that the organization is meeting the needs of groups who have traditionally encountered barriers to access and is fostering a diverse and inclusive culture — among those who support them and within the PPA itself — the Inclusion, Diversity, Equity and Accessibility (IDEA) Initiative was conceived in the spring of 2022.

PPA is kicking off the first IDEA meeting of the year with an informal Virtual Mixer! Join us on January 26 at 3PT/6 ET to discuss how we can best meet the needs of our diverse patient population! All are welcome to join! Bring Your Own Cocktail or Mocktail!
Pheo Para Factsheets
INCA (International Neuroendocrine Cancer Alliance) provides free access to download factsheets on neuroendocrine tumors in multiple languages – and they just released a factsheet on Sporadic Pheochromocytoma & Paraganglioma & Genetic Pheochromocytoma & Paraganglioma.

These factsheets share comprehensive information on NETs in lay language and were developed in collaboration with expert patients and physicians. They are aimed at patients, health professionals and anyone wanting to get a better understanding of NETs.
Check Out These Two Video Resources!
View sessions from our 2022 Virtual Pheo Para Conference on our website without registering! All sessions are available in multiple languages.
LACNETS recently held a webinar focused on a multi-disciplinary review of pheochromocytoma & paraganglioma cases. Watch the webinar with expert panelists: Dr. Karel Pacak, Dr. Jaydira Del Rivero & Dr. Erik Mittra.
Rare Disease Day, February 28

Pheo Para Alliance is supported through the generosity of the community. Make a tax- deductible donation today to join us in the fight against pheo and para.