JULY 2023

15.07.2023

AMYLOIDOSIS SUPPORT GROUPS WEBINAR:

ATTR and ATTRwt Amyloidosis

Please join the Amyloidosis Support Groups Webinar on July 15th, 2023 at 18:00 for their follow up webinar on ATTRv and ATTRwt Amyloidosis, in which cardiologists Dr. Melissa Lyle and Dr. Richard Cheng as well as neurologist Dr. Chafic Karam will discuss the latest developments in ATTR. Relevant discussion topics include: diagnosis, treatment and clinical trials. 

Please register below.

MAY 2023

25.05.2023

ARC TALKS WEBINAR: The Fundamentals of Clinical Trials and Current Advances in Amyloidosis Research 

Have you ever been approached by a clinician about participating in a clinical trial to further treatment in Amyloidosis research?

As in any clinical field, the development in research for Amyloidosis depends on clinical trials and on the 25th of May, 2023 Dr. Morie Gertz (Professor of Medicine and Chair Emeritus, Department of Internal Medicine - Mayo Clinic) will discuss the basics of clinical trials and the continued role they play in treatment possibilities. Dr. Gertz will also discuss ongoing clinical trials involving drug treatments under review for AL and ATTR patients, and their potential impact on the scope of amyloidosis care.

In the event you would like to participate, register below.

MARCH 2023

30.03.2023

ARC TALKS WEBINAR: Hereditary ATTR Amyloidosis: The Role of Genetic Testing and Recommendations for Genetic Carriers.

On the agenda in this round of ARC TALKS, cardiologist Dr. Ahmad Masri MD, MS and genetic counselor Emily Brown, MGC, CGC will outline the role of genetic testing in hereditary ATTR amyloidosis care.

In addition, disease management recommendations for genetic carriers will provide a point of discussion as will genetic counseling and the connection between hereditary ATTR amyloidosis and its genetic predisposition.

There will be a Q and A session following the presentation. The discussion will be held in English and if you are interested please register using the button below.

FEBUARY 2023

23.02.2023

ARC TALKS WEBINAR: THE ROLE OF STEM CELL TRANSPLANTS IN AL AMYLOIDOSIS TREATMENT

In this ARC Talks webinar Sandy Wong, MD, and Nancy Wong, NP, will discuss autologous stem cell transplantation as a therapy choice for AL amyloidosis patients. Dr. Wong will outline each phase of the process and go over the function of stem cell transplants in the context of medical care. Nancy Wong will discuss how to prepare for a stem cell transplant while highlighting key care considerations for each phase of therapy. Her concluding remarks will focus on important considerations during the recovery period. There will be a Q and A section following the presentation.

JANUARY 2023

26.01.2023

ARC TALKS WEBINAR: OVERVIEW OF ARC RESEARCH PROGRAMS AND RESULTS OF THE PATIENT COMMUNITY SURVEY

In this month’s ARC Talks webinar, you are invited to hear from ARC’s research team. Kristen Hsu, Executive Director of Research, and Sabrina Rebello, Research Manager, will provide an overview of ARC's research programs, share findings from their 2022 community survey results, and highlight the future direction of ARC's research. If you would like to learn more about ARC’s research focuses, be sure to join! There will be a Q and A section following the presentation.  

28.02.2022

Rare Disease Day

300 million children and adults worldwide live with rare, mostly chronic diseases. Not only are they hoping for a cure for their often serious conditions but they are also fighting for more research and adequate care.Every year on Rare Disease Day, those affected, their families and supporters around the world join together to raise awareness for rare diseases.