annual report 2018
board chair’s report
2018 was a productive year for the Alliance. We finalized our merger with the Pheo Para Troopers, launched our new website, represented our community at several NET conferences, and started the process of hiring a permanent Executive Director.
In 2019 the Pheo Para Alliance will:
Appoint a permanent Executive Director to the Pheo Para Alliance.
Successfully bring the pheo/para medical and patient community together at our June International Conference in Syracuse, NY with live webcasts that will be archived for future viewing.
Launch our online Doctor Tracker for patients.
Expand our board to include individuals with new professional and personal insight and continue to improve our governance structure.
Create a long-term, comprehensive fundraising plan that will help sustain our organization’s mission and further cultivate our current partnerships and donor base to help support current projects and needs.
As Board Chair, I believe in leading with full transparency and honesty. During the merger process, operating with only a handful of volunteer board members and a part-time Executive Director, the Alliance’s efforts were mainly focused internally to optimize its future capabilities. Unfortunately, that drew us away from some of the patient-centered outreach at the heart of our mission. That is a no fault statement, just the reality of our situation and a process that, I believe, has made us better poised to serve our community.
With that, I want to make a formal plea to all of our current and former supporters to reengage with the Alliance. Our collective success depends on it!
Many of us have the same story when it comes to pheo/para. we were ignored for years, symptoms written off as something else, and told it could never be such a rare disease. Then we educated ourselves, advocated for ourselves, and found the right person to listen.
The Alliance was formed to help unify that voice and those struggling with the same challenges. Our voice cannot be heard without you – the patient, the caregiver, the family member, the friend, medical professional, the company, the few that know pheo/para and will fight to make sure everyone does, too. We are too small of a disease to be fragmented and need to harness our collective experiences and passions. The Alliance is meant to bring us together, and we ask those that have been with us before, are with us now, and could be with us in the future, to unify with that in mind.
I want to publicly thank Emily Collins for her contribution to the Alliance as Board Chair (President) over the past few years and through the merger. Without her leadership, we would not be in the position of growth we are now.
With high expectations for 2019, the Alliance is poised for action. However, we need your support and engagement. Join us on social media, signup for our newsletter, join us in person this June at the International Pheo Para Conference. We would love the chance to meet and/or reconnect with as many of you as possible.
Though many of its efforts were merger focused in 2018, the Alliance did participate in several key advocacy initiatives. Here’s an update:
Rare Disease Week on Capitol Hill
The Alliance was present at this February event sponsored by the Rare Disease Legislative Advocates. Rare Disease Week is critical to the rare disease community, providing advocates and patients opportunities to educate members of Congress and help shape healthcare policy to better meet the needs of the rare disease patients and their families.
The Pheo Para Alliance was present at the North American Neuroendocrine Tumor Society Annual meeting, the Society of Nuclear Medicine and Molecular Imaging Annual Meeting, the International Neuroendocrine Cancer Alliance meeting, and the European Neuroendocrine Tumor Society Meeting. These meetings offered the Alliance unique opportunities to network with clinicians and researchers from around the globe.
The Pheo Para Alliance joined the National Organization for Rare Disorders (NORD). With a motto of “Alone we are rare. Together we are Strong”, NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. Membership in NORD allows the Alliance access to many programs and services and provides an opportunity to have a greater voice and reach in the rare disease community.
Stronger United Gala
Celebrating the merger of the Pheo Para Troopers and the Pheo Para Alliance, our Stronger United Gala was held in Bethesda, Maryland in May. The 2018 Founders’ Award was awarded to Giselle and Ben Huberman and the 2108 Cyrus Katzen Humanitarian Award was presented to U.S. Representative Leonard Lance. The Live Auction was a tremendous success, bringing in over seventy thousand dollars.
The Pheo Para Alliance partnered with the NET Research Foundation in both Chicago and New York for single-day conferences. Free to patients, these conferences featured breakout sessions with Pheo/Para experts for members of the PPGL community in attendance. Additionally, the Alliance was represented at the Focus on Neuroendocrine Tumors Patient Education Day at the University of Pennsylvania.
NORD 2018 Summit
The National Organization for Rare Disorders (NORD) summit was held in Washington, D.C. “Rare Disease and Orphan Products Breakthrough” was the theme of the event, giving representatives from the Alliance opportunities to hear from experts from the FDA, NIH, and the orphan product industry and join the conversation on issues of unprecedented importance for the rare disease community.
One major accomplishment of 2018 was the launch of the new Pheo Para Alliance website (www.pheopara.org). With updated educational material for both patients and healthcare providers, the website will continue to expand in 2019 as its Community Forum and Doctor Tracker go live.
World NET Cancer Day
This year marks the second year in which the Pheo Para Alliance has participated in World NET Cancer Day, a global day of awareness organized by the International Neuroendocrine Cancer Alliance (INCA).
The Pheo Para Alliance is committed to the highest standards of good stewardship and accountability. The Pheo Para Alliance is incorporated according to the not-for-profit laws of the State of Virginia.