Ways to Claim a Season of Joy During Difficult Circumstances
One Thanksgiving season, nothing seemed to go right. Both of my sons suffered in completely different ways. “MacDonald the Older” faced bullies who looked ... Read more
Updates
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald Ways to Claim a Season of Joy During Difficult Circumstances
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Columns, The 'I' in Hemophilia - a Column by Jared Formalejo Exercising with Hemophilia Has More Pros Than Cons
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Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald PTSD Will Not Define Us
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Columns, HemoGirlfriend - a Column by Alliah Czarielle Raising a Successful Family Amid Hemophilia
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News Patient Enrollment Ongoing in Phase 3 Trial of AMT-061 for Hemophilia B, uniQure Says in Update
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald Caring for Adult Children
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News Bioverativ to Present New Data on Hemophilia and Other Blood Disorders at ASH
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Columns, HemoGirlfriend - a Column by Alliah Czarielle There’s No Need to Fear a Little Blood
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald A Visit to the Dentist Reminds Me of How Far We’ve Come
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Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald Keep Your Hands and Feet to Yourself
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News Ixinity Soon To Be Available in Larger Vial and Trial Likely in Younger Children with Hemophilia B, Aptevo Says
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Columns, HemoGirlfriend - a Column by Alliah Czarielle Managing My Husband’s Hemophilia and Child-rearing Are Both Processes
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News #NORDSummit – Major Issues on Table for Rare Disease Patients in US as Midterm Elections Approach
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News Bayer’s rFVIII Replacement Therapy Jivi Approved in Canada for Hemophilia A Patients 12 and Older
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald Battling the Monsters Together
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Columns, The 'I' in Hemophilia - a Column by Jared Formalejo What I Want for My Future Child
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Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald Stories and the Sacred: I Wouldn’t Change a Thing
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News AVV-Gene Therapy Successfully Given Again to Dogs in Model of Hemophilia A
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Columns, HemoGirlfriend - a Column by Alliah Czarielle Talking to Our Future Daughter About Hemophilia
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald A Not-So-Healthy Dose of Nerves
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News Students Chosen for “Hemophilia: The Musical” Production Announced by BioMarin and Believe Limited
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News Octapharma USA Sponsors Retreat for Women With Bleeding Disorders and Screens ‘Bombardier Blood’
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Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald Invisibility Is Not the Easy Way
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Columns, HemoGirlfriend - a Column by Alliah Czarielle How I’ve Combined Being a New Bride with Volunteering
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News Rate of Total Joint Replacement Similar in Hemophilia A and B, Study Reports
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News Bypassing Agents Used for Hemophilia A May Also Benefit Children with Hemophilia B, Case Series Reports
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald ‘Baby Is Sooo Big’
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Columns, The 'I' in Hemophilia - a Column by Jared Formalejo I Work in a Hemophilia Organization to Serve My Fellow Hemophiliacs
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Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald A Routine Ailment … Maybe One Day
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News FDA Approves Hemlibra to Treat Hemophilia A Without Factor VIII Inhibitors
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News Advocacy Groups, Doctors Question Rising Prices of Rare Disease Treatments
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Columns, HemoGirlfriend - a Column by Alliah Czarielle When Safety Is a State of Mind and Not a Set of Circumstances
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald ‘Dear Doctor’: The Letter We Wrote to Our Sons’ Medical Team
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Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald Chronic Illness and Depression Often Go Hand in Hand
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Columns, HemoGirlfriend - a Column by Alliah Czarielle Baby Fever for HemoHubby and Me
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald Giving Thanks for My Hero, My Mother
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Columns, The 'I' in Hemophilia - a Column by Jared Formalejo Hemophilia, Epilepsy, and Independence: Time to Fly, Baby Bird
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Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald Lessons Learned, the Hard Way
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Columns, HemoGirlfriend - a Column by Alliah Czarielle On Entrepreneurship, Pregnancy, and a Husband’s Chronic Illnesses
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News #NORDSummit – More Than 700 Expected to Attend Oct. 15-16 Rare Disease Summit in Washington
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald Look Ma, No Port!
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News Call Out for Original Artwork by Hemophilia Patients To Be Part of NHF October Conference
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Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald How to Find and Give Hope in the Bleeding Disorder Community
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News Bike Ride Honors Barry Haarde, Who Championed Fight Against Bleeding Disorders
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Columns, HemoGirlfriend - a Column by Alliah Czarielle I Will Not Baby My Husband
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News Octapharma USA, GutMonkey Sponsor Week-long Adventure Trip to San Juan Islands
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News Liver Transplant Highly Benefits, But May Not Fully Cure, Hemophilia, Case Report Shows
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald What About Hemophilia?
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News Hemophilia A Gene Therapy Candidate SB-525 Posts Good Early Trial Results
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Columns, HemoGirlfriend - a Column by Alliah Czarielle Coping with Anxiety While Contemplating Motherhood
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News Excess Weight, Obesity Affecting More Hemophilia Patients, Study Shows
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News Idelvion for Hemophilia B Now Available in Large 3500 IU Vial Size, CSL Behring Announces
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald Helpless, but Not Hopeless: Part 3
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Columns, The 'I' in Hemophilia - a Column by Jared Formalejo Where We Are Now in Hemophilia Care
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Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald I Still Worry About My Son with Hemophilia, but He’s an Adult Now
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News Hemlibra Reduces Bleeds in Hemophilia A Patients Without Inhibitors, Phase 3 Trial Shows
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News FDA Approves Bayer’s Jivi for Hemophilia A Patients 12 and Older
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald Helpless, but Not Hopeless: Part 2
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Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald Letting Go: The Transition Begins
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Columns, HemoGirlfriend - a Column by Alliah Czarielle Why Can’t a Person with Hemophilia Be Considered ‘Healthy?’
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News First Hemophilia B Patient Treated with AMT-061 in Phase 2b Trial
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald Helpless, but Not Hopeless
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Columns, The 'I' in Hemophilia - a Column by Jared Formalejo I Graduated from College and I Have Hemophilia, so What Now?
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Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald Basketball Hopes for My Son with Hemophilia
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News Irish Medical University and Bayer Partner to Advance Treatments for Hemophilia
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Columns, HemoGirlfriend - a Column by Alliah Czarielle A Carer’s Experience of ‘Invisible Disability’ Discrimination
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News Phase 2/3 Clinical Trial of MarzAA Shows Promise in Hemophilia Treatment
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald The Dreaded ‘Beginning of School’ Question
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Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald I Will Not Be Quick to Blame My Child’s School
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Columns, HemoGirlfriend - a Column by Alliah Czarielle Help Me Help You: A Carer’s Perspective
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News Hemlibra Approved in Canada to Treat Hemophilia A Patients with Factor VIII Inhibitors
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald Our Family’s Second Hemophilia Diagnosis Was Harder than the First
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Columns, The 'I' in Hemophilia - a Column by Jared Formalejo Thinking About Finances and Fatherhood
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Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald You Can Advocate for Your Child with These Back-to-school Tips
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News Multiple Factors Contribute to Development of FVIII Inhibitors in Hemophilia, Review Finds
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News Employment Status, Pain, Low Physical Activity Linked to Anxiety, Depression in Hemophilia Patients
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald Life Can Change In an Instant
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Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald What Is a 504 Plan and Why Do I Need It?
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News Hemophilia Federation of America Gathering Memorabilia to Mark 25 Years of Service
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Columns, HemoGirlfriend - a Column by Alliah Czarielle Entering Married Life with a Husband Who Has Hemophilia
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News Gene Therapy Wins Over Prophylaxis in Cost-Benefit Analysis as Long-term Treatment for Severe Hemophilia A
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News New Kit Demonstrates Clinical Validity as Measure of FVIII Inhibitors in Hemophilia A
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald I Will Teach You How to Skate and Sing
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Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald My Mighty Warrior Is in a Bubble No More
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News The Assistance Fund Offers New Program to Help Hemophilia Patients with Medical Expenses
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Columns, HemoGirlfriend - a Column by Alliah Czarielle A Field Guide to Dating Someone with Hemophilia
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News BAY 94-9027 Shows Extended Duration in Hemophilia A Patients in Analysis of Trial Data
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald We Struggle and We Move On
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Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald Frogs, Snails, and a New Chapter
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News Pfizer Launches Phase 3 Program to Test Gene Therapy for Treating Hemophilia B
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News XaTek Raises $9M to Advance ClotChip, Portable Device That Quickly Analyzes Blood’s Ability to Clot
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News Companies Collaborating to Conduct Musical Workshop for Teens Affected by Bleeding Disorders
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald My Sons’ Courage with Hemophilia Help Me Face Diabetes Injections
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Columns, The 'I' in Hemophilia - a Column by Jared Formalejo I’m Learning to Accept My Normal
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Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald My House Move Sparked Memories of Previous Bleeds
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News Experts Define Recommendations for Best Surgery Management Practices in Hemophilia Patients
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Columns, HemoGirlfriend - a Column by Alliah Czarielle Starting My Journey to Motherhood as a #HemoGirlfriend
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News Despite Protective Effects, Cardiovascular Disease Still a Risk in Moderate to Severe Hemophilia Patients, Study Finds
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News Hemophilia Drug Development Summit Takes Aim at Hurdles Facing New and Upcoming Treatments
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Columns, In the Twinkling of an Eye - a Column by Joe MacDonald It’s a Long Way from Home to First Base
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Exercising with Hemophilia Has More Pros Than Cons
An important part of my role in the Hemophilia Association of the Philippines for Love and Service (HAPLOS) is the promotion of physical ... Read more -
PTSD Will Not Define Us
My seventh-grade son, Caeleb, is the new kid in a small, rural community where everyone has grown up together, so it’s hard to fit ... Read more -
Raising a Successful Family Amid Hemophilia
At 28 weeks pregnant, it seems I have entered my “nesting” phase. Two days ago, my husband Jared and I chanced upon a good ... Read more -
Patient Enrollment Ongoing in Phase 3 Trial of AMT-061 for Hemophilia B, uniQure Says in Update
uniQure is continuing to enroll participants for its global Phase 3 trial (NCT03569891) testing the potential gene therapy AMT-061 in men with severe or moderately ... Read more
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Caring for Adult Children
“MacDonald the Older” and I drove down the road that leads to his college. ... -
Bioverativ to Present New Data on Hemophilia and Other Blood Disorders at ASH
Bioverativ will present some of its most recent therapeutic advancements regarding hemophilia and other ... -
There’s No Need to Fear a Little Blood
As I write this, it’s Nov. 1 and we’re observing All Saints’ Day. On ... -
A Visit to the Dentist Reminds Me of How Far We’ve Come
Recently, I took my son to the dentist to have a couple of cavities ... -
Keep Your Hands and Feet to Yourself
Perhaps the most important lesson we learn at school is to keep our hands ... -
Ixinity Soon To Be Available in Larger Vial and Trial Likely in Younger Children with Hemophilia B, Aptevo Says
Aptevo Therapeutics provided an update on Ixinity, its hemophilia B therapy, that includes developing a ...
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Managing My Husband’s Hemophilia and Child-rearing Are Both Processes
“Write about the first time you witnessed me with a bleed,” offered my husband ... -
#NORDSummit – Major Issues on Table for Rare Disease Patients in US as Midterm Elections Approach
With the U.S. midterm elections now less than two weeks away, patient advocacy groups ... -
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AVV-Gene Therapy Successfully Given Again to Dogs in Model of Hemophilia A
Re-administering a viral vector-based gene therapy for hemophilia A was shown to be safe ... -
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Octapharma USA Sponsors Retreat for Women With Bleeding Disorders and Screens ‘Bombardier Blood’
There are still too many women with bleeding disorders who, despite symptoms, are unaware ... -
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Rate of Total Joint Replacement Similar in Hemophilia A and B, Study Reports
Total joint replacement (TJR) is more common in severe hemophilia patients requiring more frequent ... -
Bypassing Agents Used for Hemophilia A May Also Benefit Children with Hemophilia B, Case Series Reports
Single or combination therapy with bypassing agents used for hemophilia A patients with inhibitors ... -
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I Work in a Hemophilia Organization to Serve My Fellow Hemophiliacs
It’s rewarding to be able to serve my fellow people with hemophilia. I have ... -
A Routine Ailment … Maybe One Day
There is a funny cartoon making the Facebook rounds. It shows two images, one ... -
FDA Approves Hemlibra to Treat Hemophilia A Without Factor VIII Inhibitors
The U.S. Food and Drug administration (FDA) has approved Genentech’s Hemlibra (emicizumab-kxwh) for routine prophylactic ... -
Advocacy Groups, Doctors Question Rising Prices of Rare Disease Treatments
Half a year has gone by since disgraced pharma executive Martin Shkreli was sentenced ... -
When Safety Is a State of Mind and Not a Set of Circumstances
Today, I received a phone call from my dad. He wanted to talk to ... -
‘Dear Doctor’: The Letter We Wrote to Our Sons’ Medical Team
Dear Doctor, We are concerned about the plan regarding our son’s treatment … ... -
Chronic Illness and Depression Often Go Hand in Hand
I have suffered from clinical depression most of my life. Five weeks after my ... -
Baby Fever for HemoHubby and Me
Tomorrow is a long-awaited milestone in my pregnancy. I am scheduled to have an ... -
Giving Thanks for My Hero, My Mother
Before I share my story, I must make a disclaimer. The pastor/counselor side of ... -
Hemophilia, Epilepsy, and Independence: Time to Fly, Baby Bird
I’m a 25-year-old “PWD” (person with disabilities), and I’m not a baby bird anymore. ... -
Lessons Learned, the Hard Way
Wash your hair. Brush your teeth. Please, for the sake of the world, put ... -
On Entrepreneurship, Pregnancy, and a Husband’s Chronic Illnesses
I am a pregnant entrepreneur. Throw in a husband with hemophilia and epilepsy into ...
Europe’s CHMP Recommends Approval of Hemlibra to Treat Hemophilia A
News
Europe’s Committee for Medicinal Products for Human Use (CHMP) has issued a positive opinion supporting the approval of Hemlibra (emicizumab) for routine prophylaxis of bleeding episodes in hemophilia A patients with factor VIII inhibitors. Hemlibra is a humanized monoclonal antibody that ... Read more