Rare disease community members networking event.

Neuroendocrine Tumor Research Foundation

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Our spotlgiht member this week is the Neuroendocrine Tumor Research Foundation, formerly known as the Caring for Carcinoid Foundation. Please see below the formal press release on thier re-branding initiative:

“The Caring for Carcinoid Foundation has become the Neuroendocrine Tumor Research Foundation! Our new name is more inclusive of all types of neuroendocrine cancer and better reflects the current medical terminology for the disease. It is important that all those who are affected by neuroendocrine cancer, as well as all NET researchers, feel that they are part of our community.

Along with the name change of the organization, we are excited to be launching a new website, logo, and brand identity. Our goal is to provide a simple, easily navigable website in order to deliver the resources and information patients and researchers need in a quick and efficient way. Our mission to fund research to discover cures for carcinoid, pancreatic, and related neuroendocrine cancers is as important as ever. We believe our new name and new materials will help us advance this mission. Thank you for being a part of the Caring for Carcinoid, and now NET Research Foundation, community.”

Jamie Lacroix, Director of Communication and Outreach at Neuroendocrine Tumor Research Foundation, submitted the following Q&A to provide a better look into the orgnanization:

1.)  What does it mean to you personally to be a patient organization serving the rare community?

As an organization focused on raising funds to drive research for a cure for neuroendocrine cancers, our daily connections with patients and families serve as a constant reminder of the urgency of our mission.

2.)  What do you find your patient community values most from your organization?

Our patient community especially values our integrity, the confidence they have in our commitment to a cure, and the information and education we provide to support patients and families.

3.)  What are some of the challenges your organization has faced?

Raising funds to support research in a rare disease space is particularly challenging. We rely primarily on patients, families and others with a direct connection to neuroendocrine cancers; by definition, people who have an active interest in our work but who are also facing enormous challenges in dealing with the disease.

4.)  What has been your most successful awareness campaign and/or fundraising event?

We recently conducted a campaign to fund a major Immunotherapy (IMT) initiative for neuroendocrine cancers. Citing the amazing progress that IMT has brought to some patients with other forms of cancer, we successfully challenged the community to help us fund five major projects to bring the best IMT experts and methods to our cause to cures NETs.


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NORD is happy to be putting the spotlight on Neuroendocrine Tumor Research Foundation this week. You can look forward to social media posts on our Facebook and Twitter accounts about NETRF throughout the week! Member Organizations to NORD interested in Member Spotlight should contact their regional membership managers at NORD to learn more!