Hemophilia Federation of America

Navigating work as a person with a bleeding disorder or caregiver can be complex—from questions about disclosure, handling absences, and asking for what you need. Good thing we have resources for you! Check out our Employment Rights course on Learning Central in the “Planning Office" section. These self-guided lessons include an introduction to the topic of employment for people with bleeding disorders, the Americans with Disabilities Act, the Family and Medical Leave Act, and tips for self-advocacy in the workplace. The lessons incorporate videos, quotes, and stories from community members like you! Remember you don’t have to face work challenges alone. Visit: bit.ly/3zGmj8n! This program is made possible by the generosity of Sanofi and Genentech.

Sabemos que desde junio a noviembre estamos en la temporada de desastres naturales como los huracanes, tornados y otros eventos climatológicos. Conocemos de muchos de nuestra comunidad latina que se han visto afectados en este mes por estos eventos. Queremos saber de ustedes y que compartan tan importantes recomendaciones y precauciones que han tomado ante estos eventos con su condición de sangrado. !Unete a nuestro encuentro y conversa con tu comunidad! !esta noche! 8:00pm ET https://bit.ly/4deUCCj Este programa es posible gracias a la generosidad de Sanofi. También agradecemos a Takeda y CSL Behring por su apoyo a este programa. This program is made possible by the generosity of Sanofi. We thank Takeda and CSL Behring as well for their support of this program.

Do you have extra infusion supplies packed up in case you have to evacuate quickly? With storm season in full gear, we want to remind our community that you have contributed to a list of safety tips for travel, building a first aid kit, natural disasters, and emergency room visits, and we have collected them into a handy list that you can take anywhere. We hope these practical suggestions from people with bleeding disorders help you stay safe. Spanish: https://lnkd.in/g2tpX2ne English: https://lnkd.in/gtk5PytH

Isabella started having nosebleeds when she was just under six months old which would occur 5/6 times a day. After many visits to the doctor, she was eventually confirmed and officially diagnosed with VWD. We were relieved and scared to find this out, but since starting treatments, her quality of life has increased. The treatment plan Isabella uses has been working! She still has random bruises since she loves gymnastics, but it has given my soon-to-be 8-year-old quality of life. I will never keep her in a bubble and we want her to embrace her journey! Thank you, Isabella and your family for sharing your story! ❤️ 🩸 If you feel like you might have a bleeding disorder you are not alone, and there is help! Here is a list of Hemophilia Treatment Centers in your area to get you started on your journey. https://bit.ly/3x2Y17J

Por Hablando Contigo del Mes de Julio es uno que esperamos disfrutar en familia y con nuestras amistades. Muchos de nuestros capítulos realizan el tan esperado tradicional campamento de verano. Unete a nuestro encuentro y comparte tus ideas y experiencias de todas las actividades que realizas en los campamentos dirigidos a nuestra comunidad. Todas estas actividades tomando en consideración nuestras condiciones de sangrado. Además de estar disfrutando de el verano, sabemos que desde junio a noviembre estamos en la temporada de desastres naturales como los huracanes, tornados y otros eventos climatológicos. Conocemos de muchos de nuestra comunidad latina que se han visto afectados en este mes por estos eventos. Queremos saber de ustedes y que compartan tan importantes recomendaciones y precauciones que han tomado ante estos eventos con su condición de sangrado. !Unete a nuestro encuentro y conversa con tu comunidad! Registrar aquí: https://bit.ly/4deUCCj Este programa es posible gracias a la generosidad de Sanofi. También agradecemos a Takeda y CSL Behring por su apoyo a este programa. This program is made possible by the generosity of Sanofi. We thank Takeda and CSL Behring as well for their support of this program.

While it's inevitable that the bleeding disorders community will have medical expenses, struggling with finances may be avoidable with a little planning and understanding. Financial Matters for Bleeding Disorders is a course in HFA's Learning Central that provides expert information on managing your bills. Visit The Planning Office at bit.ly/3zGmj8n to take the course at your own pace from a computer, tablet, or mobile device. Thank you to our Learning Central sponsors, Sanofi, and Financial Wellness sponsor, Genentech.

We are so excited to bring back our Community Chats! Our Bleeding Disorders Monthly Gathering for Adults: Uniting Blood Brotherhood and Blood Sisterhood, a Zoom chat for blood sisters and blood brothers (18+) is the first step in the return of HFA's community chats. This chat will include: 🩸 Discussion of the commonalities and shared experiences blood brothers and blood sisters have and bring to the group. 🩸 Sharing differences between the two groups and their unique needs. 🩸 Devoted breakout for individual blood brother and blood sister discussions to debrief. 🩸 Answer questions of whether to continue to meet jointly or separately (or a combo of both each month) going forward. 🩸 Can we learn from each other? Should we? Join us as we reconnect and support each other through our journeys, united by blood! You Belong! Chat Tonight • 8:30 p.m. ET Visit the following link to register: https://bit.ly/466Ntld This program is made possible by the generosity of Sanofi. We thank Takeda and CSL Behring as well for their support of this program.

People with bleeding disorders can bleed into a joint after an injury or without obvious cause. This is called hemarthrosis. The pressure of blood entering the joint cavity displaces tissue and causes pain and swelling. Joint damage, such as arthritis, can occur after repeated bleeding into the same joint or after one serious joint bleed. Over time, joints can become severely damaged, causing chronic and/or acute pain and restricted range of motion in that joint. Bleeding can occur in any joint, but the joints typically affected include the elbows, ankles, and knees. It is very important to pay attention to the signs of a joint bleed. Early treatment with clotting factor or other appropriate medication is crucial to reduce the risk of joint damage. In addition to medical treatment, use “PRICE” to help a bleeding joint feel better and minimize damage: Protect the joint with a brace or ace bandage. Rest the joint. Ice the bleeding or swollen joint. Compress the joint if possible to minimize swelling. Elevate the joint if possible. To learn more about joint health, please check out the Joint Health courses in the Wellness Center in our Learning Central. https://bit.ly/4f8R0n9

Don't forget to mark your calendars for this Thursday, July 18th, from 8:30-10pm for our first You Belong chat! This month will discuss the commonalities and shared experiences blood brothers and blood sisters have and bring to the group, plus the differences between the two groups and their unique needs. Can we learn from each other? Should we? Please join us as we reconnect and support each other through our journeys, united by blood! Register at:https://bit.ly/466Ntld This program is made possible by the generosity of Sanofi. We thank Takeda and CSL Behring as well for their support of this program.

We are pleased to announce that Dateline magazine has a new home on our website! Now you can read all the latest articles in our current issue from the convenience of your computer, phone or tablet. Visit our new Dateline section that features all the latest articles, and sign up for the next issue to be sent directly to your mailbox! https://bit.ly/3WiMVVL