El Costo de la Reentrada

Después de un año difícil impulsado por la pandemia de COVID19, esperamos una nueva normalidad. Pero, ¿cómo afecta la reincorporación a la sociedad a la salud mental y cuáles son las implicaciones específicas para la comunidad de trastornos hemorrágicos? En esta sesión desmenuzaremos este tema y recibiremos consejos prácticos de un profesional de la salud mental para combatir el desgaste emocional.

Pregunte a los expertos

¿Tiene una pregunta candente que hacerle a nuestro panel de expertos? Esta sesión ofrecerá a los participantes la oportunidad de interactuar, participar y hacer preguntas que inviten a la reflexión a un panel de proveedores de atención médica interdisciplinarios en tiempo real. Esta discusión incluirá Miguel Escobar, MD; Kelli Fraga, PT, DPT; Sabrina Farina, LMSW

Inhibitor Education Series: Baby Steps Navigating Past the Pandemic

After a challenging year driven by the COVID19 pandemic, we are looking forward to a new normal. But how does re-entering society impact mental health and what are specific implications for the bleeding disorder community? In this session, we will unpack this topic and receive practical advice from a mental health professional to combat the emotional toll.

What Everyone Who Treats with Factor Needs To Know About Inhibitors

If you treat with clotting factor, you may be at risk of developing an inhibitor. This workshop is for people who do not have an inhibitor but want to learn more about risk. We will explain the basics of inhibitors, how they develop, and how and why you should have a conversation with your healthcare provider about screening and monitoring for an inhibitor.

De lo que todos los que tratan con factor deben saber sobre los Inhibidores

Si trata con factor de coagulación, puede estar en riesgo de desarrollar un inhibidor. Este taller es para personas que no tienen un inhibidor pero desean aprender más sobre el riesgo. Explicaremos los conceptos básicos de los inhibidores, cómo se desarrollan y cómo y por qué debería conversar con su proveedor de atención médica sobre la detección de un inhibidor. If you treat with clotting factor, you may be at risk of developing an inhibitor. This workshop is for people who do not have an inhibitor but want to learn more about risk.

Learning to Let Go: Fostering Independence

Let’s face it, adolescence is a challenging time even under the best of circumstances. As parents of teens with hemophilia and an inhibitor, one of those biggest challenges, preparing to let go, can be especially difficult. As children grow into their teen years, parents undergo a transition of their own, from advocates and fierce protectors to ones willing, in fits and starts, to take a step back. In this webinar, a social worker will join a teenager, young adult and mom to discuss this evolution and techniques for engendering independence.

Communicating with Your Provider About Pain

Many people with bleeding disorders find that bleeding-related pain and joint damage impact their quality of life, according to patients and caregivers surveyed in the Hemophilia Experiences, Results and Opportunities (HERO) study conducted by Novo Nordisk.  This session will improve understanding of how pain affects people with bleeding disorders, and will offer guidelines for managing acute and chronic pain.  It will also provide resources for communicating with your provider to ensure that pain associated with bleeding and joint damage is addressed appropriately.