News 1st Patient Dosed in Phase 3 Trial of Injectable MarzAA

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald Love Outweighs the Difficulties of Parenting Sons Who Have Hemophilia

Columns, The Forgotten Factor - a Column by Shellye Horowitz Hemophilia No Longer Prevents Me From Participating in Physical Activity

Columns, HemoWife - a Column by Alliah Czarielle What I Do Has Meaning and Value, and That’s My Definition of Success

News CSL Behring Acquires AMT-061, Hem B Gene Therapy in Phase 3 Trial

News Jivi May Prevent Minor Surgery Bleeds in Severe Hemophilia A Patients

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald Caring for My Grandfather Helped Teach Me How to Raise My Sons

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald When We Speak Up for Ourselves, We’re Also Advocating for Others

News Immune Deficiencies With FVIII Inhibitors Evident, But Can Be Restored

Columns, HemoWife - a Column by Alliah Czarielle Breaking Out of Our Introverted Shells for Advocacy’s Sake

News Hemlibra Found Effective for Severe Hemophilia A in Clinical Setting

News Criteria for Gene Therapy Trials Can Exclude Many With Severe Hemophilia

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald An Overwhelming Turn of Events Brings Fear for My Son’s Future

News FDA Lifts Hold on uniQure’s Gene Therapy AMT-061 for Hemophilia B

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald I Am Grateful to Have Forgotten an Important Phone Number

Columns, HemoWife - a Column by Alliah Czarielle My Husband’s Seizure Disorder Requires Extra Care Due to Hemophilia

News US Healthcare Costs Average 25 Times Higher for Hemophilia B

News Catalyst’s FIX Gene Therapy More Effective Than Padua in Early Study

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald Preparing My Son to Make an Important Healthcare Decision

News Scientists Target FVIII Inhibitor Formation in Hemophilia A

News, syndicated Quick Approval Given COVID Vaccines Raise Concerns, Rare Disease Patients Say

Columns, The Forgotten Factor - a Column by Shellye Horowitz I Wish My Dad Could See Today’s Progress in Hemophilia Treatment

Columns, HemoWife - a Column by Alliah Czarielle Boundaries Are Important for PWD Business Owners

News, syndicated EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US

News Grifols Doubles Factor VIII, IX Treatment Donations to WFH Aid Program

News Dosing Begins in Trial of Efanesoctocog Alfa in Boys With Severe Hemophilia A

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald In Times of Struggle, I Remember That Hope Is More Than a 4-letter Word

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald Memories of My Son’s Hospitalizations Are a Matter of Perspective

News Novel Illustrates Life With Hemophilia, Dungeons and Dragons

Columns, HemoWife - a Column by Alliah Czarielle Shared Struggles Allow My Husband and Me to Lean on Each Other

News Long-term Jivi Continues to Safely Prevent Bleeds in Severe Hemophilia A

News Supporters Prepare for World Hemophilia Day

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald Spring Has Often Been a Time of New Beginnings in Our Family

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald A Lot Has Changed Since My Son Last Attended School in Person

News Continuous Advate IV Effectively Prevented Bleeds in Surgery

Columns, The Forgotten Factor - a Column by Shellye Horowitz What It’s Like Having Hemophilia and Living in a Rural Town

Columns, HemoWife - a Column by Alliah Czarielle I Feel Blessed After Celebrating My Birthday With Family

News Hemophilia Carriers at High Risk for Heavy Bleeding After Childbirth

News Takeda Donating Hemophilia Treatments for 5 Years to WFH Aid Program

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald Easter Is a Reminder That We Must Face Darkness Before Light

News Hemophilia B Gene Therapy AMT-061 Unlikely to Have Caused Liver Tumor

News, syndicated Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald Parenting a Child With a Rare Condition Is Different and Spectacular

Columns, HemoWife - a Column by Alliah Czarielle Compassion and Friendship Marked My Husband’s School Years

News Activity Levels Vary Greatly Across Patients, With Effects Far From Clear

News Swimming, Hydrotherapy Improve Functional Capacity, Study Shows

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald Both Science and Religion Guide Me When Answering, ‘Why Me, Dad?’

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald Sometimes a Fun Day With Friends Outweighs the Pain That Follows

News Jivi Safely Prevents Bleeds in Young Boys With Severe Hemophilia A, Trial Finds

Columns, The Forgotten Factor - a Column by Shellye Horowitz Dumping the Imposter Syndrome and Embracing Hemophilia as a Woman

News Switch to Rixubis Not Linked to Increased Bleed Rates in Small Study

Columns, HemoWife - a Column by Alliah Czarielle How I’m ‘Future-proofing’ for My Chronically Ill Family

News Survey on COVID-19 and Mental Health Opens in UK, US and Germany

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald Removing the Medical Cabinet From Our Kitchen Inspires Hope

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald This Bleeding Disorders Awareness Month, Your Story Can Make a Difference

News Hemophilia Need Not Be Severe to Affect Life Quality for Men and Women

News Enzyre, Takeda Expand Partnership to Develop At-home Monitoring Test

Columns, HemoWife - a Column by Alliah Czarielle I Designed a Ring Inspired by Hemophilia to Help Raise Awareness

News Nominations Open for National Hemophilia Foundation Awards

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald CRISPR Gene Therapy Gives Me Hope for a Future Without Hemophilia

News Roctavian, Potential Hemophilia A Gene Therapy, Get Fresh FDA Support

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald Isolation Has Had Lingering Effects on My Son’s Mental Health

Columns, The Forgotten Factor - a Column by Shellye Horowitz Hemophilia Care Entails More Than Treating Bleeds

Columns, HemoWife - a Column by Alliah Czarielle How Disability Influences the Way We Parent

News, syndicated Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day

News Factor VII Treatment Eptacog Beta Now Under Review in Europe

News Events Raise Visibility, Support of Bleeding Disorders During Awareness Month

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald I’m Grateful for My Son’s First Pediatrician, Dr. Connelly

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald Teaching Young Adults About Hemophilia Is a Never-ending Process

News Experts Identify Unique Hemophilia Challenges, Propose Ways to Overcome

News Fitusiran Dosing in Trials Reduced to Lower Blood-clot Risk

Columns, HemoWife - a Column by Alliah Czarielle I Made the Mistake of Invalidating My Husband

News FDA Partially Rescinds Indications for BeneFIX and Ixinity

News, syndicated Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald Honoring Those Who Went Before Us

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald Sharing Our Personal Stories With Lawmakers Is a Transformative Process

News Low Risk of Developing Inhibitors Found for Nuwiq Patients

Columns, The Forgotten Factor - a Column by Shellye Horowitz Why I Don’t Hate My Dad for Giving Me Hemophilia

News, syndicated Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Columns, HemoWife - a Column by Alliah Czarielle Learning About Rare Diseases Broadened My Perspective on Health and Wellness

News Posture Exercises May Improve Joint Health in Children

News Efanesoctocog Alfa on Fast Track for Hemophilia A

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald My Family’s Angel Has Left a Mark on Our Hearts

News, syndicated Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald Tips for Offering Help to a Loved One During a Crisis

News Hemlibra Can Help Manage Bleeding in AHA, Study Finds

Columns, HemoWife - a Column by Alliah Czarielle Why I’d Take Many Small Bleeds Over a Large, Extended Injury

News Preventive Advate Found Better Than On-demand Treatment in Hemophilia A

News Nasal Desmopressin Recall Affects Availability Through 2023

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald To Move From Hopelessness to Joy, I Had to Be Honest With Myself

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald In Caregiving, Raising the White Flag Can Be a Sign of Strength

News, syndicated Pandemic Won’t Stop Rare Disease Day on Feb. 28

Columns, The Forgotten Factor - a Column by Shellye Horowitz I Have Hemophilia and Tattoos, and I Don’t Regret It

News Gene Therapy SPK-8016 Shows Early Promise for Severe Hemophilia A

Columns, HemoWife - a Column by Alliah Czarielle Why I Don’t Always Think About Hemophilia

News MarzAA Shows Promise in Hemophilia Animal Models

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald As a Parent, I Can Only Show Up With What I Know

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald Let’s End the Game of Comparisons With a Little Love

News Kovaltry Safe, Effective for Children With Hemophilia A in Real-world Study

News, syndicated NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns