The Role of Advocacy in MyPART
In the MyPART network, our mission is to engage patients as partners in rare tumor research. Advocacy groups are a critical bridge between patients and researchers, helping share experiences and expertise between these important stakeholders. Non-profit organizations dedicated to improving the experiences and outcomes of people with rare solid tumors are important members of the MyPART network.
How We Can Work Together
Our goal is to work with you, our advocacy partners, to raise awareness and provide education about the tumors we study.
- share information about our research activities and clinical trials for you to disseminate to your constituents.
- provide your group with summaries of the latest research findings written for lay audiences about your rare tumors of interest.
- include representatives from your group in workshops and focus groups at NCI.
- link to your website to help people find your support and educational services.
- provide you with the MyPART network badge to display on your website indicating your membership in the network.
- provide valuable input on issues important to the people you represent, so we can make sure our research is centered on the needs of people with rare tumors.
- link to the MyPART website to help people with rare tumors find information on the MyPART network.
- share news with your constituents about MyPART clinical trials and other opportunities for involvement.
How to Join Our Network
To learn more about having your group become a member of the MyPART network, please email NCICCRRareTumors@mail.nih.gov for more information.