Support

JOIN THE THALASSEMIA COMMUNITY

While thalassemia is a rare condition, it’s important to know you are not alone

There are communities of people living with thalassemia who interact in a variety of ways:

  • Meeting one-on-one
  • In person
  • Over the phone
  • Anonymously online

When I first started talking about thalassemia openly, my parents were a little wary about what others would say. Today, they’re super supportive.

—Yasmeen, living with beta-TDT

Yasmeen—real patient living with transfusion-dependent beta-thalassemia—has a supportive family

Beta-TDT=transfusion-dependent beta-thalassemia.

Important information about thalassemia callout

There are many options to connect with others. By actively participating in a thalassemia community, you can help yourself and people like you.

How can myAgios® Patient Support Services help?

myAgios is a customized support program for people living with thalassemia. As a part of the program, myAgios Clinical Nurse Educators (CNEs) can help you and your family learn more about thalassemia, with support that meets each individual’s needs:

A man with thalassemia researches support on his tablet

Thalassemia Education

  • Help you prepare for your next discussion with healthcare providers and related professionals
  • Provide an overview of thalassemia including the cause, symptoms, and complications
  • Explain and help you understand the latest research about thalassemia
A Clinical Nurse Educator is waiting to connect with a thalassemia patient

Marie
Agios Clinical Nurse Educator

Individualized Support

  • Meet in person or virtually at a time that is convenient for you
  • Provide emotional support and listen to understand your experience
  • Identify how to best support you and help you set goals to thrive with thalassemia
Thalassemia patients show that there is a community of others with thalassemia

Community Events

  • Share invites to educational webinars and in-person events to hear from thalassemia specialists and other patients
  • Inform you about ways to interact with the thalassemia community, including social media and advocacy groups
  • Connect you with other patients and caregivers who may have similar experience living with thalassemia

CNEs are employees of Agios Pharmaceuticals and do not provide medical advice. For medical advice or treatment-related questions, please talk to your healthcare team.

Call 1-877-77-AGIOS (1-877-772-4467)

Mon-Fri, 8 AM to 8 PM ET for personalized support from a myAgios Clinical Nurse Educator. Live interpreters in many languages available upon request.

There are also organizations that provide support and education to individuals and families living with thalassemia. Here are some that might be a fit for you:

Hear from people like you sharing their experience with thalassemia

Explore Thalassemia Stories

Hear from experts and connect with others at a thalassemia event

Learn About Upcoming Events