IWMF Educational Forum: May 30 – June 1
Join IWMF to celebrate their 30th Annual Ed Forum for #WM patients and caregivers May 30-June 1. The IWMF Educational Forum is a pivotal gathering designed to educate and empower …
Rare Cancer Coalition: Fighting Rare Cancers
The Rare Cancer Coalition, formalized in 2017 as a program under the NORD Membership umbrella, unites advocacy organizations working in rare cancers to collaborate on issues facing their communities.
Our Goal
To eliminate the challenges faced by people affected by rare cancers through:
- Global awareness through campaigns such as #RareCancerDay, and representation at major events
- Publications and medical education
- Patient and caregiver education
- Collaborative networking and peer-to-peer mentoring
- Capacity building for Rare Cancer Patient Advocacy Groups
Click here to read our accomplishments or contact us to learn more.
Rare Cancer Day
Rare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Rare Cancer Day is celebrated on September 30th.
Facts & Figures
- The 5-year survival rate is lower for people living with a rare cancer than those diagnosed with a more common cancer.
- Approximately 1 in 4 Americans living with cancer are diagnosed with a rare cancer.
- The Coalition is composed of NORD Member Organizations supporting rare cancer patients. To join, learn more about NORD membership.
Upcoming Rare Cancer Coalition Events
12 events found.
🩺 2025 IWMF Educational Forum: Advancing Waldenström’s Macroglobulinemia Care
🩺 2025 IWMF Educational Forum: Advancing Waldenström’s Macroglobulinemia Care Dates: May 30 – June 1, 2025Location: Sawgrass Marriott Golf Resort & Spa, Ponte Vedra Beach, FLRegistration: Register here Join the …
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Rare Cancer Coalition at ASCO! May 30 – June 3
Rare Cancer Coalition at ASCO! May 30 – June 3 The Rare Cancer Coalition will have a booth in the Patient Advocacy Pavilion at the American Society of Clinical Oncology …
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SDS PFDD Meeting EL-PFDD Meeting for Shwachman-Diamond Syndrome: June 4th
SDS PFDD Meeting EL-PFDD Meeting for Shwachman-Diamond Syndrome June 4 This meeting is an Externally-led Patient-Focused Drug Development meeting, which is a special type of meeting developed by the FDA …
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RCC Policy Priorities Working Group Meeting: June 11, 11:30 AM
The purpose of the RCC Policy Priorities Working Group is to monitor emerging federal and state policies that impact the rare cancer community. Members will work to equip advocates and …
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Cutaneous Lymphoma Foundation – Upcoming Patient Education Event: June 14th
Cutaneous Lymphoma Foundation – Upcoming Patient Education Event This free Patients Seminar is offered to help patients, care partners and others affected by cutaneous lymphoma receive accurate information about cutaneous …
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🌟 2025 Gorlin Syndrome Alliance National Conference: “Our Story, Our Science”
Dates: June 20–22, 2025Location: Holiday Inn Orlando – Disney Springs, FLRegistration: Register here Join us for the Gorlin Syndrome Alliance’s 2025 National Conference, a pivotal event for individuals and families …
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🌟 Raymond A. Wood Foundation Survivor Support Group – Monthly Virtual Meetings
Survivor Support Group – Monthly Virtual Meetings Dates: Third Saturday of each monthTime: 3:00 PM ETLocation: Online via ZoomRegistration: Register here The Raymond A. Wood Foundation's Survivor Support Group offers …
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🩺 2025 SNMMI Patient Education Day
🩺 2025 SNMMI Patient Education Day PheoPara Alliance Date: Sunday, June 22, 2025Location: New Orleans Convention Center, New Orleans, LAFormat: Hybrid (In-person & Virtual)Registration: Register here Join the Society of …
Aplastic Anemia and MDS International Foundation Patient and Family Conferences
AAMDSIF hosts Patient and Family Conferences around the United States each year. Conferences are free to attend and include presentations by the world's leading medical experts in rare blood cancers …
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🌟 2025 LFSA Youth & Young Adult Workshop
🌟 2025 LFSA Youth & Young Adult Workshop Dates: August 15–17, 2025Location: Boston, MAEligibility: Ages 13–25 with Li-Fraumeni Syndrome (LFS)Registration: Interest Form The LFSA Youth & Young Adult Workshop is …
Rare Cancer Day: September 30
Rare Cancer Day: September 30 Rare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Spearheaded by …
Rare Cancer Coalition Members
The Rare Cancer Coalition under NORD has a special Memorandum Of Understanding (MOU) partnership between the Center For Cancer Research, National Cancer Institute, concerning their Rare Tumor Patient Engagement Network (RTPEN)
Continuing Medical Education
NORD and Platform Q health are proud to feature ongoing courses about Rare Cancers as an important part of our CME offerings. These courses are available for credit for one year following their publication.
Click here to check out some of the past and present CME sessions on Rare Cancer.