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Expecting Health
United States
Приєднався 30 вер 2019
Expecting Health was founded by a group of women with a simple idea: families deserve and should expect more - more support, more guidance, better health.
Born from Genetic Alliance, a nonprofit organization rooted in 33 years of community programs and representing national voices and family-centered experiences, Expecting Health shares science-based and policy-informed information that reflects the lived experiences of individuals and their families. We do this through the power of relationships; convening the top experts; working with key leaders in health; and engaging with families and communities at the center of the conversation.
Visit our website to learn more: expectinghealth.org/
Born from Genetic Alliance, a nonprofit organization rooted in 33 years of community programs and representing national voices and family-centered experiences, Expecting Health shares science-based and policy-informed information that reflects the lived experiences of individuals and their families. We do this through the power of relationships; convening the top experts; working with key leaders in health; and engaging with families and communities at the center of the conversation.
Visit our website to learn more: expectinghealth.org/
Educating the Future: Newborn Screening Student Research Projects
Educating the Future: Newborn Screening Student Research Projects
Переглядів: 89
Відео
Exploring the Unique Challenges of Navigating Rare Diseases Within the Black Community
Переглядів 11910 місяців тому
During this webinar, we explored some of the obstacles unique to the Black community when moving through life with a rare disease. Our distinguished speakers discussed various challenges, from socioeconomic factors to healthcare disparities. Also shared were practical tips and collaborative approaches to improve the experiences of Black individuals in the rare disease space and healthcare syste...
Empowering Voices: Exploring Survey Data to Support Family Leaders in Systems Change
Переглядів 4910 місяців тому
In this video, we spotlight the work of the National Genetics Education and Family Support Center (the Family Center) on family engagement in genetic services. The speakers also provided a recap of the work that has been accomplished in understanding the role of families in the regional genetics networks and family engagement in the genetics healthcare delivery system and shared the knowledge t...
Embrace the Now: A Journey into Mindful Self-Care
Переглядів 3110 місяців тому
Join us in an exploration of the concept of self-care, emphasizing its significance in achieving a balanced and fulfilling life. Speakers will delve into practical strategies for incorporating self-care into daily routines, considering the unique needs and challenges individuals face. Key topics covered include stress management techniques, mindfulness and meditation practices, fostering health...
Explore Your Family Health History This Holiday Season
Переглядів 23Рік тому
Empower your health journey this holiday season by learning the importance of knowing your family's health history and how to initiate these discussions. Your health legacy begins with a conversation! Use the links below to access these resources. • 'Family History - How Knowledge Can Support Your Genetics Journey' video: bit.ly/3sJg9Bk • 'From Genes to Generations - Knowing Your Family History...
Family Leaders: Forging Pathways for Systems Change
Переглядів 375Рік тому
The National Genetics Education and Family Center (NGEFSC) hosted a Family Leadership Workshop in 2023. The aim of the Workshop was two-fold: to continue the work of assessing the measurement of family engagement in the genetics healthcare delivery system as well as understanding the family experience within this system. The 36 Family Leader participants from 29 US States/Territories were asked...
From Genes to Generations: Knowing Your Family History
Переглядів 85Рік тому
Racial and ethnic minorities and other underserved populations experience greater barriers to screening, diagnosis, and treatment for rare diseases than common conditions due to various cultural, socioeconomic, and environmental factors. Knowing and understanding your family's health history is one way to empower families and increase their confidence to seek necessary healthcare services. Earl...
How Can Patients and Healthcare Professionals Communicate and Support Each Other More Effectively?
Переглядів 104Рік тому
Effective communication is a key element in ensuring that appropriate care is provided to patients, and it is especially essential for those with complex medical needs. Conversations surrounding topics such as social determinants of health, everyday resources, and medication regimens require trust and understanding to ensure that the providers, patients, and their families can make appropriate ...
A Blueprint for Success: A Guide to Implement Newborn Screening Education for Expecting Families
Переглядів 2,4 тис.Рік тому
During this webinar, we explore the new 'Implementation Toolkit for State Newborn Screening Programs,' which is a product of our collaboration with our Education and Communications Workgroup. Our panelists also shared their experiences successfully implementing prenatal education activities in their respective states. Moderator: Marianna Raia, MS, CGC Associate Director of Programs Expecting He...
2023 GRACE Award Recipient Presentation
Переглядів 69Рік тому
This video features the Immune Deficiency Foundation's SCID Compass program as the 2023 Newborn Screening GRACE Award Recipient. During this presentation, Alissa Creamer, the Senior Director of Education & Community Services at the Immune Deficiency Foundation, shared the need for this program, how it was developed and implemented, and how the SCID Compass team authentically engaged families to...
60 Years in the Making: Engaging Families in Newborn Screening Research
Переглядів 110Рік тому
We invited expert leaders from the American College of Medical Genetics and Genomics (ACMG) to discuss the history and evolution of family engagement in newborn screening, explain what it means to partner with families in newborn screening research, and identify future opportunities to deepen this engagement and these partnerships. Speakers from the ACMG: Amy Brower, PhD | Director and Principa...
60 Years in the Making: Families Leading in Newborn Screening
Переглядів 110Рік тому
On September 5th, some of Expecting Health’s Navigate Newborn Screening Ambassadors shared their experiences navigating the newborn screening system. In watching this webinar, you will also learn more about the Navigate Newborn Screening Ambassador program and hear from three expert leaders about what it means for families to engage in the newborn screening system. Speakers: • Ryan Colburn - Pr...
Stem Cell Transplant as a Curative Treatment for Sickle Cell Disease
Переглядів 101Рік тому
Join Expecting Health and Be The Match as we discuss the current practices and considerations of bone marrow transplant as a curative treatment for Sickle Cell disease. Our panel shared their experiences navigating the complexities of transplant and discussed how we can increase awareness within the newborn screening community. Speakers: - Timothy Olson, M.D., Ph.D. • Medical Director, Pediatri...
Implicit Bias: Identifying, Addressing, and Reducing Its Impact
Переглядів 60Рік тому
Join us for a discussion about how implicit bias can affect an individual’s care and learn about possible ways to create open conversations between providers, patients, and their families to reduce implicit biases. Stay connected: Expecting Health | expectinghealth.org/ Baby's First Test | www.babysfirsttest.org/ National Genetics Education and Family Support Center | nationalfamilycenter.org/
Casual Conversations, Challenging Topics: Being Black in Healthcare - Patient and Provider Views
Переглядів 90Рік тому
There has been a lot of conversation about Black patients’ experiences within the healthcare system and how disparities and the biased viewpoints of some providers can make it difficult for Black patients to receive quality healthcare. On Thursday, July 27th, Expecting Health brought together Dr. Michele Wright, a rare disease advocate, and Dr. Malika Fair, an emergency medicine physician, to s...
Family Engagement: What is Family Engagement? What Does It Look Like in the Healthcare Space?
Переглядів 98Рік тому
Family Engagement: What is Family Engagement? What Does It Look Like in the Healthcare Space?
An Assessment of State NBS Websites Regarding Communication of Dried Blood Spot Storage and Use
Переглядів 221Рік тому
An Assessment of State NBS Websites Regarding Communication of Dried Blood Spot Storage and Use
Getting Involved in the Newborn Screening System
Переглядів 183Рік тому
Getting Involved in the Newborn Screening System
The Patels' Journey Through Newborn Screening
Переглядів 247Рік тому
The Patels' Journey Through Newborn Screening
Video 3: Newborn Screening at the State Level
Переглядів 153Рік тому
Video 3: Newborn Screening at the State Level
Video 2: Understanding the Newborn Screening System
Переглядів 250Рік тому
Video 2: Understanding the Newborn Screening System
Historias de líderes familiares: ¿Quién es un líder familiar?
Переглядів 17Рік тому
Historias de líderes familiares: ¿Quién es un líder familiar?
Join in: Workgroups and Opportunities for 2023
Переглядів 49Рік тому
Join in: Workgroups and Opportunities for 2023
Wishes for the Future of Newborn Screening
Переглядів 852 роки тому
Wishes for the Future of Newborn Screening
Family History: How Knowledge Can Support Your Genetics Journey
Переглядів 762 роки тому
Family History: How Knowledge Can Support Your Genetics Journey
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