Rare Diseases – Education and Resources: A CPAN Advocacy Chat
A cancer diagnosis can be devastating. Most patients are reassured that they have multiple treatment options and the history of research and experience on their side, but a select minority will be diagnosed with rare forms of cancer that are not as well-known or require specialized treatment. Facing a rare disease is a scary experience, but there are organizations dedicated to researching these diseases and assisting the patients who live with them.
On July 13 at 12 p.m. ET, COA’s Director of Patient Advocacy and Education Rose Gerber will talk to Jill Pollander, RN, MSN, the vice president of patient services at the National Organization for Rare Diseases (NORD). NORD conducts research into lesser known and new diseases, including cancer, to help physicians and patients achieve better outcomes. Additionally, NORD helps patients access the necessary care and treatment for their rare diagnoses, ensuring that these patients receive care no matter where they are. Currently, NORD assists almost 10,000 patients with treatment for their rare diseases.
This event will be part of our virtual CPAN Advocacy Chats series - short, monthly educational webinars on key cancer issues and the policies that impact them. Each month will feature a new topic and special guests joining us. Patients, survivors, caregivers, and other cancer care advocates are all invited to join us for these free, interactive, virtual events!
