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News & Perspectives

Infusing Love: A or B (Arthritis or Bleed?)

May 10, 2017

Back in the “old days” before prophylaxis (prophy), hemophiliacs were treated on demand when they had a bleed. Max is just old enough to fall into that category so he didn’t switch to prophy until he was five years old. By then he had already had enough bleeds in his left ankle that the damage […]

Infusing Love: Life Imitates Art

May 3, 2017

When ABC premiered, “Speechless” last fall, I wasn’t sure if it would meet my expectations. Would it show special needs parenting and family life in a realistic, often sarcastic way, or would it have the feel of an afterschool special? I’m happy to say it’s readily become one of a handful of shows we watch […]

uniQure Receives EU PRIME Designation For Hemophilia B Product

May 2, 2017

 uniQure recently received the designation of a “priority medicine” from the European Union for a potential gene therapy treatment for Hemophilia B. From the press release: uniQure N.V. (NASDAQ:QURE), a leading gene therapy company advancing transformative therapies for patients with severe medical needs, today announced that AMT-060, its proprietary, investigational gene therapy in patients with severe […]

Fit Factor: Step up your Grilling Game this Summer

May 2, 2017

With summer just around the corner, we’ll soon be able to pull out those grills for our favorite outdoor meals. Whether you’ve got a taste for meat, fish, seafood, tofu or vegetables, grilling is one of the healthier cooking methods. Cooking food on a grill allows excess fat to drip away from the food, without […]

Dear Addy: Symposium

May 1, 2017

Dear Addy, I attended Symposium in April and gained a lot from the advocacy sessions. I want to incorporate what I learned at Symposium into my regular routine. What recommendations do you have for making advocacy an everyday activity? Signed, Maintaining the Momentum Dear Momentum, Thanks for attending HFA’s Symposium last month in Providence. It’s […]

Infusing Love: Changes

April 28, 2017

As parents of a nearly twenty five year old son, my husband George and I have enough to write a book about being the parents of a child with severe hemophilia B. There are so many ups and downs raising Michael over the years. Our most recent up and down has been the transition of […]

Volunteer Spotlight: Geared Up to Health, Wellness & Community

April 28, 2017

The Terry Lamb Health and Wellness Award is award is for exceptional commitment to supporting HFA in its national efforts to encourage health, nutrition and wellness behaviors in the bleeding disorders community. Terry Lamb had severe hemophilia, was an active member of the bleeding disorder community, and was a respected leader. Terry grew up in […]

Volunteer Spotlight: A Community Builder

April 27, 2017

Each year, at the HFA Symposium, we recognize the tremendous volunteerism in the bleeding disorders community. The Michael Davon Community Service award is for extraordinary service to the community via one’s national or global volunteerism and charitable giving. Michael Davon was a New Englander who was integral to the inception of HFA. He was described […]

Volunteer Spotlight: The Future is Bright

April 26, 2017

Rose Bender is a 20-year old sophomore at Yale University living with severe hemophilia A. She was 9 months old when her family first heard about hemophilia. Her bleeding at the time was so severe that she needed a whole blood transfusion, cryoprecipitate, and fresh frozen plasma just to stay alive. Volunteering and giving back […]

Volunteer Spotlight: Blood Brothers & Tireless Advocates

April 25, 2017

The bleeding disorders community has been built on the tireless advocacy work of volunteers. Today, we recognize two gentlemen and Blood Brothers who were mentors, friends, and inspiring advocates. We were honored to recognize Ellis Sulser and John Reed during our recent Symposium. The Ron Niederman Humanitarian Award recognizes extraordinary and inspirational service to the […]

Volunteer Spotlight: No Brighter Star

April 24, 2017

Each year, the HFA staff recognizes the national spirit and remarkable volunteerism for HFA with the #bleedingdisorders community. As #VolunteerAppreciationMonth comes to a close this week, we will be recognizing award winners from #HFA2017. Today, we remember Star Tyree, a long-time HFA supporter, volunteer, and friend.   Starlyn (Star) Tyree was a former Executive Director […]

Volunteer Spotlight: Award Winner Unites Community

April 21, 2017

In conjunction with Volunteer Appreciation Month, we are highlighting volunteers who help to make the bleeding disorders community inclusive and informative. Today, we are proud to recognize one of our recent award winners at our 2017 Symposium, Darcy Zwier! The “It Takes a Village” award is provided to an individual who goes above and beyond in […]

Infusing Love: Virtual Hugs

April 19, 2017

  I need to send a big hug and thank you to all the bleeder moms who have supported me. I thank you for the endless support you continue to give me. But I especially need to send a special hug to the one mom who has been there to pick me up these last […]

CSL Behring Celebrates World Hemophilia Day

April 19, 2017

Global Drug Manufacturer CSL Behring announced last week it’s recognition of World Hemophilia Day by sharing news of a donation of more than 4 million international units (IUs) of its medicines to treat hemophilia A and/or von Willebrand Disease to the WFH Global Alliance for Progress (GAP) Program. To read the full release from CSL Behring, […]

Dear Addy: HFA Community Research Portal

April 18, 2017

Dear Addy, What is the HFA Community Research Portal and why is it important to me? Sincerely, Research Meets Advocacy Dear Research, The HFA Community Research Portal is an exciting new research project that will provide individuals with bleeding disorders the chance to directly engage in meaningful research projects. The HFA Community Research Portal is […]

Genentech Announces Interim Results from Phase III HAVEN 2 Study

April 17, 2017

On April 16, 2017 Genentech announced interim results from the Phase III HAVEN 2 study evaluating emicizumab prophylaxis in children less than 12 years of age with hemophilia A and inhibitors to factor VIII. According to this Genentech’s press releases, “interim analysis after a median of 12 weeks of treatment, emicizumab prophylaxis showed a clinically meaningful reduction in the […]

Pharmaceutical Companies Recognize World Hemophilia Day

April 17, 2017

Today, on World Hemophilia Day, many pharmaceutical companies joined in the celebration by recognizing and supporting the hemophilia community. Linked below are statements from a wide group of companies on today’s celebration of World Hemophilia Day: Grifols Press Release Bioverativ Press Release Novo Nordisk on supporting women with bleeding disorders Shire Press Release CSL Behring […]

Bioverativ Strengthens Commitment To Women With Bleeding Disorders

April 17, 2017

Bioverativ joins the global hemophilia community in recognizing World Hemophilia Day and supporting the millions of women and girls impacted by bleeding disorders through this year’s theme, “Hear Their Voices.” Excerpted from the press release: “Bioverativ shares the World Federation of Hemophilia’s commitment to understanding the needs of all members of the bleeding disorders community, including […]

Novo Nordisk Recognizes World Hemophilia Day

April 17, 2017

Drug manufacturer, Novo Nordisk recognized World Hemophilia Day 2017 by celebrating the theme of the year; Hear Their Voices, by showing support for women with bleeding disorders. To learn more, read Novo Nordisk’s press release in it’s entirety. here.

Shire Recognizes World Hemophilia Day

April 17, 2017

Clotting factor manufacturer, Shire, is celebrating World Hemophilia Day in part by hosting an awareness rally in Chicago, Illinois. The rally is aimed mainly to educate the public on the dramatic estimate of a hemophilia bleeding episode occurring worldwide every 3-15 seconds. See more on their website. Read a full statement from Shire recognizing World Hemophilia […]

Grifols Donates 140 Million Units of Factor on World Hemophilia Day

April 17, 2017

As part of World Hemophilia Day celebrations, Grifols has announced a large donation of clotting factor to the World Federation of Hemophilia (WFH) Humanitarian Aid Program. This announcement is a continuation of the company’s three-year commitment from 2014, bringing the total humanitarian aid commitment to more than 200M IU of Factor VIII over eight years Read the […]

Catalyst Biosciences Completes New Hemophilia B Drug Toxicology Study

April 14, 2017

On April 11, Catalyst Biosciences, a clinical-stage biopharmaceutical company focused on developing novel medicines to address hematology indications, reached a key milestone towards starting human trials with completion of the CB 2679d/ISU304 toxicology studies. Their press release can be read in full here.

Aptevo’s Ixinity Found To Be Safe In Children Under 12 With Hemophilia B

April 14, 2017

Aptevo’s Ixinity, previously approved for use in people over the age of 12, just received approval for use in children under 12, per their ongoing phase 3 trial. Read the full press release here.

Spark Therapeutics Presents Updated Preliminary Data from Hemophilia B Phase 1/2 Trial

April 14, 2017

Spark Therapeutics issued a press release on updated preliminary data from 10 infused participants in the ongoing Phase 1/2 clinical trial of investigational SPK-9001 for hemophilia B. The data is being presented at Hemostastis & Thrombosis Research Society (HTRS) this week. The press release can be read in full here.

Infusing Love: A Letter to A Mentor

April 12, 2017

  Dear Corey, Max was 2 or 3 years old when I first met you. I had been told about this conference happening in Sturbridge, Massachusetts. I really didn’t even know what it was for, but at that point I was desperate to be connected with anyone who had hemophilia. It was a little shocking […]

A Patient’s Perspective on a Fresh Osteoarticular Allograft

April 11, 2017

By: Christopher Quesenberry Having a rare condition like hemophilia has never held me back from pursuing an active lifestyle. The demands of maintaining a high level of activity, however, ultimately resulted in joint failure. My right knee has been considered a “target joint” since I was in the fifth grade. By the time I reached […]

Infusing Love: In Search of Stress? No!

April 5, 2017

Stress is defined as a state of mental or emotional strain or tension resulting from adverse or very demanding circumstances. As parents we know stress well. It almost becomes like a good old friend that you have reconnected with. It seems like we can’t escape it but, we can only minimize it. Raising a child […]

Fit Factor: Kick the Can

April 3, 2017

Not a big soup fan? Don’t write it off just yet! Many of us are familiar with only canned soup, which can often be less than appetizing. Most store bought canned soups are also high in sodium and devoid of nutrients. Try making homemade soup for a change. It is one of the most healthy […]

Dear Addy: Share Your Story

April 2, 2017

Dear Addy, I’ve been following the news about the Affordable Care Act. What else can the bleeding disorders community do to ensure access to quality health care? Signed, Energized Advocate Dear Energized, Advocacy is most successful when people share their personal story about how legislation affects them. Across political parties, Americans are reaching out to […]

Infusing Love: Radical Change

March 29, 2017

  When my son Thomas came into the world, he radically changed my knowledge base about hemophilia and other bleeding disorders. As this March comes to an end, I’ve been thinking about how far we’ve come as a family since Thomas’s diagnosis. I decided to look for the original email we sent to friends and […]


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