World Federation of HemophiliaApr 25, 2025

Exciting news! Sanofi and Sobi, together with the WFH and WFH USA have announced the second renewal of a five-year contract to provide support to the WFH Humanitarian Aid Program in the form of treatment product donations and financial assistance allowing the WFH to continue to deliver aid to people with inherited bleeding disorders across the globe. Learn more: https://bit.ly/4cRk167

The Haemophilia Society UKApr 28, 2025

There were tears (of joy), there were smiles, there were blisters and a LOT of confetti! London Marathon 2025 completed!! 🥇✅

We couldn't possibly be prouder of our 12 incredible runners. Xan, Mark, Steve, Alfie, Isla, Maggie, Jo, Lauren, Amy, Mareska, Kate and Luke. Congratulations to each and every one of you - you are AMAZING!

If you're feeling inspired and would like to run next year's race - the ballot is now open and closes this Friday 2 May. You can enter here https://www.londonmarathonevents.co.uk/london-marathon/enter-ballot

We have a really limited number of charity places so we ask everyone who wants to represent THS to first apply through the ballot. We'll then give as many charity places to those who are unsuccessful as we can.

You can still donate to the 2025 team here https://www.justgiving.com/campaign/thsmarathon25

Hemophilia of GeorgiaApr 28, 2025

#ThankYou – A huge shout out to all of our generous sponsors for this year's Trot to Clot Walk/Run! With your continued partnership and support we raised over $92,000 for youth and family programming, including Camp Wannaklot!

Sponsors:

Ameris Bank

Mauldin & Jenkins

Genentech

Kedrion

North Atlanta Primary Care

Sanofi

Takeda

Bayer

CSL Behring

Hema Biologics

Novo Nordisk

Octapharma

Merrill Lynch

Gallagher

New Image Roofing

World Federation of HemophiliaApr 16, 2025

Tomorrow is #WorldHemophiliaDay! 💬🌍

This year’s theme, “Access for All: Women and Girls Bleed Too,” highlights the urgent need for equity in care. Join the global conversation using our social media hashtags and amplify your events and stories with the #WHD2025 toolkit: https://bit.ly/3up6exA#LightItUpRed#WeBleedToo

Hemophilia Federation of AmericaApr 17, 2025

It's World Hemophilia Day, and our team is in DC advocating for YOU — the bleeding disorders community. 💪🩸

This year’s theme, “Women and Girls Bleed Too,” spotlights an often-overlooked part of our community, but we’re here fighting for access for ALL with a bleeding disorder.

We know we ask a lot — your stories, your strength, your time — and today, we want you to know: we see you, we hear you, and we are fighting for you every single day.

On World Hemophilia Day, we raise our voices to be heard — louder, stronger, together. ❤️

Hemophilia Federation of AmericaApr 08, 2025

On this day 35 years ago, Ryan White lost his battle with HIV/AIDS at the age of 18. During the 1980s, Ryan bravely became a national spokesperson and symbol of hope for the hemophilia and HIV/AIDS community after being expelled from middle school due to community fears the virus would spread to other children. Today, his mother Jeanne continues to work tirelessly to spread Ryan's message and advocate for all individuals who are suffering. We remember Ryan everyday, but especially today. ❤️ 🩸

World Federation of HemophiliaApr 11, 2025

This week, the WFH took part in the WHO side event on Advancing Health Equity: Universal Access to Health Products, held during the 58th Session of the Commission on Population and Development at the United Nations.

During this policy roundtable, the WFH delivered a statement emphasizing its submissions for the 2025 update of the WHO Essential Medicines List (EML). The statement highlighted the need to better leverage the EML to improve equitable access to treatment at the country level—through more effective centralized procurement mechanisms and greater involvement of patient organizations and clinicians in the process. Watch the recording of the meeting here: https://bit.ly/3G2VkqR#AdvanceHealthEquity# BleedingDisorders

The Haemophilia Society UKApr 08, 2025

Last weekend, we hosted the latest of our Newly-Diagnosed Families events. This is always a highlight of our events calendar as we bring together a group of families for a weekend of information, insights and workshops to answer questions and help families begin to get their heads round a recent bleeding disorder diagnosis.

It gives them an opportunity to ask any burning questions and meet some of the THS team, including our amazing youth ambassadors.

It was, as ever, a fantastic event and such a pleasure to meet all of those who attended. We'll be sharing details of the next one very soon.

Hemophilia Federation of AmericaApr 08, 2025

On this day 35 years ago, Ryan White lost his battle with HIV/AIDS at the age of 18. During the 1980s, Ryan bravely became a national spokesperson and symbol of hope for the hemophilia and HIV/AIDS community after being expelled from middle school due to community fears the virus would spread to other children. Today, his mother Jeanne continues to work tirelessly to spread Ryan's message and advocate for all individuals who are suffering. We remember Ryan everyday, but especially today. ❤️ 🩸

The Haemophilia Society UKApr 08, 2025

Last weekend, we hosted the latest of our Newly-Diagnosed Families events. This is always a highlight of our events calendar as we bring together a group of families for a weekend of information, insights and workshops to answer questions and help families begin to get their heads round a recent bleeding disorder diagnosis.

It gives them an opportunity to ask any burning questions and meet some of the THS team, including our amazing youth ambassadors.

It was, as ever, a fantastic event and such a pleasure to meet all of those who attended. We'll be sharing details of the next one very soon.

Hemophilia of GeorgiaApr 08, 2025

We are pleased to announce that an article written by “Bobby” Duc Tran, Hemophilia of Georgia’s Chief Medical Officer, was published in the March 2025 edition of the Georgia OBGyn Society’s Newsletter. Read more:

World Federation of HemophiliaMar 26, 2025

🌍 This #WorldHemophiliaDay, let’s shine a light on the unique challenges faced by women and girls with #BleedingDisorders. From awareness gaps to social taboos and limited access to care, the hurdles are many—but so are the opportunities to make a difference. 🩸

We need to empower women and girls to take charge of their health through targeted educational resources, workshops and support. Learn more: https://bit.ly/3up6exA 💪 #WHD2025#WeBleedToo

Hemophilia Federation of AmericaMar 27, 2025

Congratulations to our 2025 HFA Award Winners! 🎉👏

We are honored to recognize these incredible individuals for their dedication and impact in the bleeding disorders community:

🏆 It Takes a Village Award – Amanda Wilson

🏆 Charles Stanley Hamilton Legacy Award – Vincent & Maryann Fusaro

🏆 Ron Neiderman Humanitarian Award – Dr. Jonathan Roberts, MD

🏆 Volunteer of the Year Award – Renita Johnson

🏆 Leaders of the Future Young Adult Award – Kason Loving

🏆 Michael Davon Community Service Award – Tamarrow Mitchell

🏆 TEA Award – Shari Luckey

Thank you all for your passion, hard work, and contributions that make our community stronger. Congratulations! 🎉💙

Hope for HemophiliaMar 31, 2025

We're fighting harmful insurance policies that discriminate against people with bleeding disorders and other chronic conditions requiring high-cost medications. Current tactics like copay accumulator adjusters and vertical integration are deliberately designed to reduce access to vital treatments, forcing patients to make impossible financial choices.

• Copay accumulator programs prevent patient assistance funds from counting toward deductibles, effectively forcing patients to pay twice

• Insurance companies are creating vertical integration by owning PBMs and specialty pharmacies, then forcing patients to use these pharmacies

• Independent specialty pharmacies provide crucial services (nursing, education, supplies) that are being eliminated

• The Help Copays Act gained 142 co-sponsors in the previous Congress but still needs more support

• PBM reform offers an opportunity to address vertical integration through "any willing provider" language

• Effective advocacy requires understanding how bills move through committees and reaching both Republican and Democratic lawmakers

• Building relationships with healthcare staffers is often more impactful than meeting with members directly

• Hope Charities is organizing a Washington DC advocacy event June 3-5 to speak directly with lawmakers

Email us at events@hope-charities.org or info@hope-charities.org to share your story or visit hope-charities.org for more information about our advocacy efforts.

Hemophilia Federation of AmericaMar 21, 2025

🎉 Bleeding Disorders Trivia Time! 🎉

We have some fun trivia to raise awareness for bleeding disorders, and we want YOU to get involved! 💡

Each week, we’ll pick 2 winners across all of our socials to win a t-shirt of your choice from our Limited Edition Bleeding Disorders Awareness Collection. These t-shirts are available ONLY until the end of the month, with proceeds benefiting our Helping Hands program, which helps those in the bleeding disorders community with financial support. Even better – proceeds will be generously matched by the Alliance Pharmacy! 🙌 https://hubs.li/Q03c3ZCq0

🎯 How to Enter:

Comment below with your answer to today’s question. We’ll pick two winners at random across all of our socials. Please do not click on any links in chat as we will message you if you win. Only US residents, please. 📩

👇 Here’s today’s trivia question: What nationality was Dr. Erik von Willebrand for which von Willebrand disease is named? He discovered the disease in a 5-year-old girl, of the same nationality, in 1924?

Hint: The answer can be found somewhere on our website!

Let's have some fun and raise awareness for bleeding disorders! 💙

Hemophilia of GeorgiaMar 25, 2025

#ThankYou - We are grateful to our generous sponsors, participants, and volunteers for your support of our Score Fore a Cure fundraising event! You helped make Score an incredible success and your contributions helped raise over $35,000 for bleeding disorder research. We couldn’t do it without you!

World Federation of HemophiliaMar 19, 2025

The WFH has been informed that Takeda has announced the global discontinuation of its #HemophiliaA treatments, HEMOFIL® M and RECOMBINATE. The WFH is aware that transitioning to other products can be challenging. Takeda informed the WFH that they are actively reaching out to healthcare professionals and WFH national member organizations to support the transition. Read more: https://bit.ly/4kE45HS

Hemophilia Federation of AmericaMar 15, 2025

🎗️Today is Ultra-Rare Bleeding Disorder Awareness Day!

Did you know that ultra-rare factor deficiencies affect fewer than 200,000 people in the U.S.? These conditions occur when a person lacks or has insufficient clotting factors in their blood, making it harder for their body to stop bleeding. While ultra-rare, these factor deficiencies are a reality for many, impacting individuals in ways that are often hard to detect.

Some common symptoms to watch for include:

🩸 Heavy menstrual bleeding (menorrhagia)

🩸 Easy or unexplained bruising

🩸 Muscle and soft tissue bleeds

🩸 Frequent nosebleeds

🩸 Mouth bleeds

🩸 Bleeding after surgery or trauma

Ultra-rare factor deficiencies are inherited, and although only a few can be acquired later in life, they can make everyday life a little more challenging.

Here’s the list of ultra-rare factor deficiencies:

🔹 FId

🔹 FIId

🔹 FVd

🔹 FVIId

🔹 FXd

🔹 FXId

🔹 FXIII

Also, ultra-rare platelet deficiencies include:

🔸 Glanzmann’s Thrombasthenia

🔸 Platelet Disorders

The numbers may be small, but the impact is real. Are you one of the ultra-rare? Tell us in the comments. Let's continue to spread awareness and support those who live with these conditions! 💙

Don't forget to read our Bleeding Disorders Awareness Month Blog post for other ways to celebrate and spread awareness. https://hubs.li/Q03bVzYb0

Hemophilia of GeorgiaMar 17, 2025

Last week, Hemophilia of Georgia staff had a heartfelt and meaningful farewell sendoff party for Christi Humphrey, a dedicated Social Worker, who has been with HoG and served our community for 25 years. Everyone had a great time at the tea-themed party letting Christi know how much she is loved and will be missed. We wish Christi the very best in her future endeavors!

The Haemophilia Society UKMar 17, 2025

Huge congratulations to Jacob, his friends and mum, Nicola, on completing their swimathon this weekend - raising £430 in the process.

Jacob is one of our most dedicated young fundraisers and an inspiration to us all! You'll be able to read more about him in our upcoming issue of Community Matters which should be hitting your doorsteps in early April.

Well done Jacob and team :)

You can donate to Jacob's Just Giving here https://www.justgiving.com/page/nicola-green-1

Hemophilia Federation of AmericaMar 07, 2025

🎉 Bleeding Disorders Trivia Time! 🎉

We're kicking off a fun new trivia series to raise awareness for bleeding disorders, and we want YOU to get involved! 💡

Each week, we’ll pick 2 winners across all of our socials to win a t-shirt of your choice from our Limited Edition Bleeding Disorders Awareness Collection. These t-shirts are available ONLY until the end of the month, with proceeds benefiting our Helping Hands program, which helps those in the bleeding disorders community with financial support. Even better – proceeds will be generously matched by the Alliance Pharmacy! 🙌 https://hubs.li/Q039PMsc0

🎯 How to Enter:

Comment below with your answer to today’s question. We’ll pick two winners at random across all of our socials by the end of the day and notify them. Only US residents, please. 📩

If you see someone trying to post as HFA in the comments saying you won, please report and don't click on links. We will not be replying to winners until later today. Thank you and sorry for the spam.

👇 Here’s today’s trivia question: Who created the first US comprehensive care center for the treatment of bleeding disorders in 1959? This person’s efforts helped create hemophilia treatment centers (HTCs) throughout the country. 💉

Hint: The answer can be found somewhere on our website!

Let's have some fun, raise awareness, and make a difference in the lives of those affected by bleeding disorders! 💙

World Federation of HemophiliaMar 10, 2025

🌍 Meet Anupama from India, a member of the WFH Women and girls with inherited #BleedingDisorders committee. Diagnosed with mild factor VIII deficiency in her 30s, she highlights the need for awareness, diagnosis, and equitable treatment for women and girls worldwide. This #WorldHemophiliaDay, let’s raise awareness and advocate together! https://bit.ly/3up6exA#WHD2025 DrAnupama Pattiyeri

Hope for HemophiliaMar 10, 2025

March is Bleeding Disorders Awareness Month: a time to shine a light on the thousands affected by these conditions and advocate through education and awareness.

🩸 Swipe through to learn some fun facts and help spread the word!

Hemophilia Federation of AmericaFeb 28, 2025

Today is Rare Disease Day. Let's take a moment to raise awareness about Hemophilia, a rare bleeding disorder that affects over 30,000 people in the U.S.

Hemophilia B, in particular, is quite rare. Out of the 30,000 Americans with hemophilia, only about 7,000 have Hemophilia B.

Common symptoms include: 🩸 Bleeding into muscles and joints (pain & swelling) 🩸 Nosebleeds 🩸 Prolonged bleeding from cuts, dental work, or surgery 🩸 Easy bruising 🩸 Blood in urine or stool 🩸 Gastrointestinal & urinary tract bleeding 🩸 Unexplained bleeding 🩸 Large bruises/hematomas 🩸 Heavy menstrual bleeding (Menorrhagia)

If you or a family member experience any of these symptoms and haven't been diagnosed, it's important to reach out to your healthcare provider for testing and a referral to a hematologist or Hemophilia Treatment Center (HTC). Early diagnosis can make all the difference. 💙 #RareDiseaseDay#Hemophilia

Hope for HemophiliaFeb 26, 2025

Rare disease Day! February 28th

What a way to represent the rare disease community!

Hemophilia of GeorgiaFeb 28, 2025

February 28th is #RareDiseaseDay, an international day to raise awareness about the treatment and care for the more than 7,000 rare disorders that affect people in the U.S. #Hemophilia and #vonWillebrandDisease are two of the #bleedingdisorders that are focused on and recognized on this important day. As we head into #BleedingDisordersAwarenessMonth in March, this is a great time to learn more about how Hemophilia of Georgia's programs and comprehensive care services are helping to improve the lives of individuals living with a bleeding disorder: https://www.hog.org/programs/

Hemophilia Federation of AmericaFeb 27, 2025

🌟 March is Bleeding Disorders Awareness Month!

We’re excited to share brand new graphics to help spread awareness and show your support for the bleeding disorders community. ❤️ Your voice can make a difference in raising awareness, promoting education, and empowering those affected.

📲 Download and share the new graphics to show your commitment to raising awareness throughout March! https://hubs.li/Q038wgSw0

Join us all month as we celebrate our incredible community!

We want to hear YOUR story—how do YOU thrive with a bleeding disorder? 💪💖 Share what challenges you’ve overcome to do the things that bring you joy and happiness!

Our community doesn't let boundaries hold us back, and we want to highlight that strength. Let’s inspire one another and show the world who we are!

Drop your stories below or tag us—Together, we can increase understanding, and bring awareness to all living with bleeding disorders. Let’s make this bleeding disorders month unforgettable! 💪

Hemophilia of GeorgiaFeb 26, 2025

Our Chief Community Engagement Officer, Vic McCarty and our VP of Community Engagement, Kim Williams are at the Emory Pathways Center for a Recruitment Fair. Come out to see them if you are interested learning more about opportunities at Hemophilia of Georgia.

World Federation of HemophiliaFeb 21, 2025

During the WFH's visit to #Egypt, we saw great progress in hemophilia care, thanks to the Egyptian Hemophilia Society (EHS)’s leadership. Yet, adult and uninsured patients still rely on on-demand treatment offered by WFH Humanitarian Aid. Grifols, an early WFH donor, is expanding access through an innovative public-private partnership to collect plasma in the country following the highest international standards for the benefit of persons with primary deficiency and #BleedingDisorders. Read more: https://bit.ly/4gZh4ko

Hemophilia B Bleeding Rates Remain Low After Four Years

Four years after receiving Hemgenix, people with hemophilia B have significantly fewer bleeding episodes and most no longer need regular replacement therapy, which has greatly improved their quality of life.

Etranacogene Dezaparvovec Shows Long-Term Efficacy

Generally, this treatment helps people with hemophilia B by reducing bleeding episodes and the need for frequent clotting factor infusions, offering a more stable and independent management of the condition.

The Haemophilia Society UKFeb 14, 2025

A new product for severe haemophilia A which reduces the number of treatments needed while increasing the duration of factor cover has been licensed in the UK.

Sobi’s efanesoctocog alfa, known as Altuvoct or efa, is a new extended half-life factor VIII product for treatment of severe haemophilia A in anyone aged over two years. It is infused intravenously.

Find out more here.

World Federation of HemophiliaFeb 18, 2025

🌍 Volunteer Spotlight: From youth delegate to WFH Board member, Deon York has spent decades advocating for people with #BleedingDisorders. Honoured with the 2024 International Frank Schnabel Award, he continues to drive change in the global bleeding disorders community. His advice? Find where your skills fit, stay true to your purpose, and work together to make a difference. 🔗 Read more: https://bit.ly/3EAP5d0

Hemophilia Federation of AmericaFeb 17, 2025

🌟 National Random Acts of Kindness Day 🌟

A small gesture can go a long way! Today, let's spread positivity by practicing kindness in any way we can – whether it’s a helping hand, a kind word, or a thoughtful surprise. 💙

For those living with bleeding disorders, kindness can mean so much more – whether it's offering support, listening with understanding, or simply checking in to see how someone’s doing. Every act of generosity helps build a stronger, more compassionate community.

How do you spread kindness? 💫

CSL Reports Success in Hemophilia B Gene Therapy

Treatment significantly reduces bleeding in hemophilia B patients, allowing most to stop regular infusions.

HEMGENIX Shows Long-Term Efficacy in Hemophilia B

Treatment with HEMGENIX reduces bleeding episodes by about 90% and eliminates the need for regular prophylactic infusions in most patients with hemophilia B, improving their quality of life.

Problem Joints Worsen Hemophilia A Outcomes

Difficulty with joints can lead to worse health outcomes for people with Hemophilia A, affecting mobility and overall well-being due to frequent bleeding and joint damage.

World Federation of HemophiliaFeb 04, 2025

💬 "There's always light at the end of a dark tunnel." Tatiana shares her journey of raising a daughter with severe factor VII deficiency—facing challenges, finding strength, and advocating for better care. Let's raise awareness and give girls with #Bleedingdisorders the care they deserve. Learn more: https://bit.ly/3up6exA 💪 #WHD2025#WeBleedToo

Hemophilia Federation of AmericaFeb 04, 2025

Luke thought he'd never see his son Bennett snowboard, especially with hemophilia. But look at him now—riding the slopes like a pro and even putting his dad to shame! 🙌🏂 Sure, he's rocking some elbow and knee guards under his suit, but who would've thought just a few years ago that the younger generation would be able to thrive like this? 💪

Bennett's story is proof that with determination and the right care, nothing has to hold you back from doing what you love.

How do YOU overcome your bleeding disorder to chase your dreams? ❤️

Hemophilia of GeorgiaFeb 06, 2025

Eliseo has turned his challenging experiences with a severe bleeding disorder into a source of inspiration and support for others. Read about Eliseo's bleeding disorder journey: https://www.hog.org/publications/detail/from-camper-to-counselor-eliseos-journey-with-hemophilia

Lentiviral Vector Therapy Shows Favorable Effect in Hemophilia

Researchers have successfully used lentiviral vectors to treat hemophilia A by improving blood clotting factor levels, helping patients avoid spontaneous bleeding. This approach may benefit patients with anti-AAV antibodies.

Gene Therapy Stabilizes FVIII in Hemophilia A Patients

Researchers used modified blood stem cells to help five hemophilia A patients produce stable levels of clotting factor VIII, preventing bleeding episodes during the study period.

Hemlibra Eases Pain, Improves Life Quality

Generally, Hemlibra helps reduce bleeding and pain, enhancing overall well-being for people with hemophilia A by preventing frequent bleeding episodes and improving joint health.

Hemophilia Federation of AmericaFeb 05, 2025

Today, we celebrate pediatric hematologist and oncologist, Dr. Tammuella Singleton, Chief Science Officer, American Hemostasis and Thrombosis Network (ATHN).

Patients and their families have described her as the “best hematologist ever” who is “incredibly knowledgeable, thorough and kind” and provides a “tremendous amount of care and professionalism.”

Thank you, Dr. Singleton, for all that you do to assist the bleeding disorders community!

Hemophilia Federation of AmericaFeb 04, 2025

Luke thought he’d never see his son Bennett snowboard, especially with hemophilia. But look at him now—riding the slopes like a pro and even putting his dad to shame! 🙌🏂 Sure, he’s rocking some elbow and knee guards under his suit, but who would’ve thought just a few years ago that the younger generation would be able to thrive like this? 💪

Bennett’s story is proof that with determination and the right care, nothing has to hold you back from doing what you love.

How do YOU overcome your bleeding disorder to chase your dreams? ❤️

World Federation of HemophiliaFeb 05, 2025

🌍 The WFH is proud to be at #EAHAD2025! Today, during the poster presentations, Donna Coffin and Mayss Naccache from the WFH showcased three impactful posters:

📌 Developing evidence-based guidelines for AAV gene therapy in hemophilia

📌 Enhancing global collaboration: The role of data governance in the WFH Gene Therapy Registry

📌 Developing a prioritized set of advocacy indicators for enhanced hemophilia care in Africa using WBDR and AGS data

Thank you to everyone who stopped by to learn more and engage with us!

UCSD Provides New Gene Therapy for Hemophilia B

Recently, UCSD Health began offering a novel gene therapy for hemophilia B, which reduces bleeding episodes by increasing clotting factor production in the blood, improving patients' quality of life.

Saliva Helps Prevent Mouth Bleeds in Hemophilia A

Saliva contains special substances that help stop bleeding quickly in people with hemophilia A, particularly in the mouth and throat. This natural protection reduces the risk of prolonged bleeding in these areas.