The Chordoma Foundation began with a dual mission to lead the search for a cure and to improve the lives of those affected by chordoma. While we have always focused on both, during the early years as a small, upstart organization, we invested more of our limited resources in advancing research, even as we recognized the tremendous need within the patient community for assistance in finding optimal care and overcoming both the practical and emotional challenges of battling this disease.
At last, thanks to the hard work and generosity of so many, the Foundation has grown to the point that we now have the resources and capacity to devote more attention to our efforts to serve the patient community. To this end, we are excited to announce that Shannon Lozinsky has joined the Chordoma Foundation’s staff as our first Patient Services Manager. A Licensed Clinical Social Worker Associate and trained educator, Shannon has spent her career working in nonprofit organizations, social service agencies, and in private counseling practice with adults, children and families.
As Patient Services Manager, Shannon will oversee a suite of new programs including:
- Our new Patient Navigation Service, which provides one-on-one guidance and personalized support to patients and families through every stage of their journey, helping them to understand and access optimal treatment options and navigate the financial and logistical challenges of getting appropriate care.
- A searchable Doctor Directory to help patients find experienced chordoma specialists,
- Timely announcements about new clinical trials and assistance with enrolling in these trials,
- New educational materials and website content to help patients and families make well-informed healthcare decisions,
- Chordoma Community Conferences, including our new series of regional conferences as well as national and international events,
- An expanded Peer Support Program to help members of the patient community connect and support one another; and
- More programs and services to identify, connect with, and meet the needs of chordoma patients around the world.
As Patient Services Manager, Shannon will work closely with our Medical Advisory Board to shape these programs to meet the unique needs of the chordoma patient community, with a particular focus on empowering patients to make decisions that help them achieve their own goals throughout their journey with chordoma.
Shannon joins us excited to be a source of support and information for the chordoma community. “I am impressed by the chordoma community’s dedication to one another and the lasting relationships that are forged through the shared experiences of those battling this disease,” she says. “I am looking forward to supporting this community in any way that I can.”
We think you’ll find Shannon thoughtful, sensitive, and easy to connect with, and we’re excited to welcome her to the Foundation team. Shannon will work out of our office in Durham, North Carolina. While she is currently a one-woman shop, we anticipate adding to her team as our services and resources grow.
To take advantage of these services, reach out to Shannon and the Patient Services Program by calling 919-809-6779, ext. 114 or emailing us..