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chronic myelomonocytic leukaemia (CMML)

Aplastic Anemia, MDS, and PNH Virtual Support Group

Event Date: 
Sat, 05/28/2022 - 10:30am (EDT)

AAMDSIF is pleased to announce that we will host a support group for patients diagnosed with

The Rise of the Expert Patient in Cancer: From Backseat Passenger to Co-navigator

PURPOSE:
Patients who have cancer have leveraged the Internet to gain a better understanding of their disease and connect across geographic boundaries with others facing the same challenges. Online cancer communities have developed into resources that highlight new research and evolving care pathways. Combined with increasing health literacy and social media, they have enabled some patients to become experts in their cancer. This combination of empowerment and expertise describes the new “e-patients.”

Aplastic Anemia, MDS, and PNH Virtual Support Group

Event Date: 
Sat, 04/23/2022 - 10:30am (EDT)

AAMDSIF is pleased to announce that we will host a support group for patients diagnosed with

Seeing Cancer From All Sides: Richard M. Stone Is Giant of Cancer Care in Leukemia

Driven by his mother’s advice and his father’s memory, Richard M. Stone, MD, rose to become a global leader in leukemia care and research.

Growing up, Richard M. Stone, MD, thought he was going to be an attorney like his father, but his direction in life changed when he was 15. His father, Benjamin, developed kidney cancer when Stone was just 5 years old, and 10 years later, the disease metastasized and took the man’s life.

Stone says he went from being middle class to poor rapidly after his father died. “And that sort of gave me the incentive to work hard,” he said.

Aplastic Anemia Virtual Support Group

Event Date: 
Thu, 04/14/2022 - 4:00pm (EDT)

AAMDSIF is pleased to announce that we will host a support group for patients diagnosed with

Aplastic Anemia Virtual Support Group (West Coast)

Event Date: 
Tue, 04/26/2022 - 9:30pm (EDT)

AAMDSIF is pleased to announce that we will host a support group for patients diagnosed with

MDS Virtual Patient Support Group

Event Date: 
Sat, 03/12/2022 - 1:00pm (EST)

This virtual support group is designed to support patients diagnosed with MDS. The group is hosted by AAMDSIF and will be monitored to ensure the privacy and safety of our participants.

Transplant Virtual Support Group

Event Date: 
Wed, 03/16/2022 - 5:30pm (EDT)

This virtual support group is designed to support patients who have undergone transplant or who are considering this as a curative option for

Science Simplified: What is a Natural History Study?

Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science accessible and empower rare disease community members with scientific knowledge. Dr. Brown has over a decade of experience in neurodevelopmental research and is currently the Scientific Director for TESS Research Foundation. Please reach out to her at tanya@tessfoundation.org if you have questions or comments.

Pediatric Parents Virtual Support Group

Event Date: 
Tue, 03/08/2022 - 7:30pm (EST)

This virtual support group is designed to support pediatric parents whose children have been diagnosed with

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