Receive Our Newsletter

Infusing Love logo_square

Infusing Love: Meet Kristi

  Happy summer to all! I’m honored to join the ranks of the Infusing Love bloggers, and appreciate the opportunity to share my family’s stories and perspectives on living with hemophilia. Our family includes myself, my husband Nick, and our son, Liam, who is 4 ½. We live in Vermont right on the border with […]

ACTION ALERT: July 17, 2017 Update on BCRA

A vote on the health care bill will happen soon, and our organizations need you to take action. On July 13, 2017, the Senate released another “discussion draft” of the BCRA. Despite promises from numerous lawmakers to change the bill, the latest iteration of the bill actually decreases protections for those with pre-existing conditions. The […]

FAQ: Hemophilia Memorial at the National Memorial AIDS Grove

  How did the Hemophilia Memorial at the National AIDS Memorial Grove come to be? In 2016, National AIDS Memorial Grove reached out asking for support for their “Surviving Voices” project. This is a multi-year oral history project meant to ensure that stories and lessons of the AIDS epidemic are captured, curated, and retained for […]

Infusing Love logo_square

Infusing Love: Not What I Had Planned

I like control. I like order. I like a plan. I like lists. Not in an overly aggressive way, but in a way that makes me feel calm. If I can plan for it, I can feel in control of it. Hemophilia does not work this way. Hemophilia and all the moving parts involved with […]

stressed_appointment_dear_addy

Dear Addy: Hematology Visit

Dear Addy, I often become flustered when I visit my hematologist, despite having lots of questions. Can you offer guidance on how to prepare for my visit so I get my questions answered? Signed, Stressed by Appointment Dear Stressed, Any doctor visit can generate a case of nerves. If you have butterflies in your stomach […]

CDC Health Advisory: Patients Receiving Eculizumab (Soliris®) at High Risk for Invasive Meningococcal Disease Despite Vaccination

Per an early release of the Centers for Disease Control and Prevention (CDC) Morbidity and Mortality Weekly Report (MMWR), new information was released today regarding Eculizumab (Soliris®) in patients with the rare blood disorders, paroxysmal nocturnal hemoglobinuria and atypical hemolytic uremic syndrome. Read the MMWR article in full here.  

sunburn_fit_factor

FitFactor: Enjoying Summer

Summer is in full swing, and with so many fun things to do outside, it’s easy to act first – think later. But the hot summer months bring a certain level of risk, so here are a few precautions to take before heading outside. Heat and Sun: We’ve all been there – we spend the […]

Intern Introspective: A Week in the Life

The halfway point of our Policy and Government Relations Internship program is an excellent time for the interns to reflect on the first five weeks of their internship. La’Brittinee and Paul break down what an average week looks like for them as an HFA intern. Paul: After our first action packed week of the internship […]

action_alert

Bleeding Disorders Organizations Urge Senators to Vote No on Better Care Reconciliation Act

  For the past few days, our organizations have been encouraging you to call, tweet and email your Senators to vote No on the Better Care Reconciliation Act (BCRA).  On June 27th, Senate Majority Leader Mitch McConnell delayed the Senate vote on the bill but the vote could occur quickly if Leader McConnell is able […]

Infusing Love logo_square

Infusing Love: As He Climbs On the Bus

By now, for most of us another school year has come to an end. For me this usually means complete and utter joy! No more homework, no more early wakes up to catch the bus, no more worrying about clean PE uniforms, and the list goes on and on. Nicholas just finished the 8th grade. […]

Page 1 of 6812345678910NextLast »

Assisting and Advocating for the Bleeding Disorders Community