Today is World Hemophilia Day! Every year, the bleeding disorders community comes together to celebrate advances in care and to reflect on our shared goal of Treatment for All. This year’s theme is Outreach & Identification—“The first step to care”.
🥳 Happy
#WorldHemophiliaDay
, everyone! 🎈Today, we celebrate our global community and raise awareness for this important cause. Let's spread the word and show our support!
#WHD2023
#BleedingDisorders
Learn more:
We are pleased to announce that Madrid,
#Spain
was selected as the location for the next WFH World Congress in today’s GA. La Federación Española de Hemofilia,
@fedhemo
, will host the event in 2024. We thank all NMOs for putting their candidacies forward.
It's finally arrived: April 17th! Today marks
#WorldHemophiliaDay
—a day dedicated to celebrating our global community. From all of us at the WFH, we wish you a joyous
#WHD2024
! 🎉
The WFH presents this year’s International Healthcare Volunteer Award to Dr. Steve Kitchen, for his dedication in sharing knowledge on
#laboratory
science with healthcare professionals globally. On behalf of the
#bleedingdisorders
community, Thank you!
On the eve of
#WHD2021
check out some of our “Light it up Red” landmarks as they start illuminating in anticipation of the global celebration tomorrow!
@LethbridgeCity
@RBCPlaceLondon
Join them in illuminating tomorrow with our Facebook frame:
On the eve of
#WorldHemophiliaDay
, the WFH CEO releases a message urging everyone to stay safe, stay connected and Get+involved virtually! Thanks to the entire bleeding disorders community around the world, for your continuous engagement and dedication to
#TreatmentForAll
We are pleased to say that 5,010 people from 137 countries attended
#WFHcongress2018
. We are proud to be the largest international meeting for the global bleeding disorders community & this is thanks to people like you!
📸Photo highlights here:
Wishing you all a Happy
#WHD2019
! The World Federation is thrilled to see the global
#bleedingdisorders
community come together to celebrate! We will be sharing pictures and stories from around the world all day today on here and on our platform:
The WFH is happy to announce that the first arthroplasty in a hemophiliac in Nepal was successfully carried out through the WFH Twinning program between Rochester, NY and the Civil Hospital, Kathmandu!
#Treatmentforall
We are thrilled to award Prof. Sukesh Nair with the 2024 WFH International Healthcare Volunteer Award! His career dedication to patient care and global healthcare advancement has greatly impacted treatment worldwide. Congratulations! 🎉👏
#WFHCongress2024
Now published! The 3rd edition of the WFH Guidelines for the Management of Hemophilia. These high-quality, evidence- and expert-informed treatment guidelines offer a means to bridge the gap between treatment practices and care around the world:
This month, representatives from
#hemophilia
patient organizations are calling for transparency and caution as the science of
#gene
therapy progresses forward. Read the full article here:
This World Hemophilia Day, learn how the WFH World Bleeding Disorders Registry (WBDR) is helping advance the understanding and care of people with
#hemophilia
worldwide.
Sharing knowledge makes us stronger.
#WHD2018
How exciting to witness these iconic landmarks shining bright in red! Let's continue to raise awareness and show support for our global
#BleedingDisordes
community. Happy
#WorldHemophiliaDay
! Find the list of landmarks here:
We're excited for
#WFHCongress2024
to kick off in
#Madrid
tomorrow with the Professional Development Day Workshops and the Opening Ceremony! In-person registration opens tomorrow at 7 AM. Can't wait to see you there! 🎉🌍
We wanted to take the opportunity during
#WHD2020
to celebrate almost three decades of partnership with some of our visionary partners such as
@TakedaPharma
Head over to Takeda’s channel to see what they’re up to today to GET+INVOLVED.
#Hemophilia
#BleedingDisorders
Today is World Hemophilia Day! Celebrate with friends and family this year, by staying home and using your internet-connected device to Get+involved virtually! Stay Safe! Visit and share your story. We are now LIVE!
The WFH is proud to announce that Takeda has joined the WFH Humanitarian Aid Program with a 5-year product donation of factor and bypassing agents. This commitment is a new milestone for Takeda’s collaboration with the WFH. Read more:
#hemophilia
On the eve of
#WHD2022
check out some of our
#LightItUpRed
landmarks as they start illuminating in anticipation of the global celebration tomorrow!
See a full list of landmarks lighting up red and find more
#WorldHemophiliaDay
resources here:
Wiley—publisher of Haemophilia, the official journal of the World Federation of Hemophilia (WFH)—has made all COVID-19-related publications in
#Haemophilia
freely available for access the free content, please click here:
Latifa Lamheneand Baiba Ziemele have been co-opted into the WFH Board of Directors. Both women were recommended by Cesar Garrido, President of the WFH, in order to diversify the representation and skillset of the WFH Board of Directors.
Happy
#WorldBloodDonorDay
!🩸Today, we at WFH thank all the individuals worldwide who give their blood to help save lives! By donating blood, you are making a difference in improving access to treatment for people with
#BleedingDisorders
. Learn more:
On
#WorldHemophiliaDay
, we are proud to collect stories from people affected by
#BleedingDisorders
worldwide! Join us on our story site to share your own experience and read about others. Together, let's raise awareness and support our global community! .
April 17, 2021 is World Hemophilia Day! This year's theme: "Adapting to change: sustaining care in a new world". This important event is about bringing the bleeding disorders community together, & is especially important given the COVID-19 pandemic. More:
The WFH would like to express solidarity with the bleeding disorders community and with all people who are impacted by the conflict in Ukraine. We hope that peace will return soon. We are monitoring the situation and exploring ways to get product donations to affected regions.
What an incredible lead-up to
#WFHCongress2024
! Participants of the Global National Members Organization Training (GNMOT) gather from across the globe for an enriching experience. 🌍🎓
What a remarkable gathering!
#WFHCongress2024
brought together over 3,000 delegates from 135 countries. 🌍Their participation is proof of our community’s commitment to the WFH vision of
#TreatmentForAll
. Read more:
A letter to the editor, published in
#Haemophilia
, by Leonard Valentino, Mark Skinner & Steven Pipe looks at how telemedicine has impacted the process of maintaining access to
#hemophilia
treatment products & to specialized integrated care in HTCs. More:
It’s with great sadness that we inform you that due to the COVID-19 pandemic, the WFH has made the difficult, but necessary, decision to cancel the WFH 2020 World Congress for the health and safety of our
#bleedingdisorders
community. Read the statement:
A new article providing additional information on how people with
#hemophilia
will be impacted by the COVID‐19 pandemic has been published in Haemophilia, the official journal of the WFH. Read it here:
The WFH is happy to announce the 2022 Twins of the Year for both, the Hemophilia Organization Twinning (HOT) and the Hemophilia Treatment Centre Twinning (HTC) programs. Congratulations to all of the partners involved! 🥳
#TwinningForHemophilia
#WorkingTogether
#HTC
#HOT
🎉 What a wonderful celebration! Big thank you to all who joined us in supporting
#WorldHemophiliaDay
at the WFH booth—snapping photos, grabbing treats, and connecting with each other. Your presence made it truly special. 🙌
#WFHCongress2024
#WHD2024
Great news for
#hemophilia
patients in
#Bangladesh
. For the first time ever, the government has allocated funds to purchase factor concentrate in six hospitals around the country. Thank you to all who worked tirelessly to make this happen.
#TreatmentForAll
Tomorrow is
#WorldHemophiliaDay
! Join the global conversation with our social media hashtags, amplify your posts with our toolkit: and check out the written AND video stories from around the
#bleedingdisorders
world on
#hemophilia
The WFH is proud to report that the Impact Factor (IF) of the official journal of the WFH, Haemophilia, has increased to 3.59 from the 2017 IF (2.768)! The WFH, Wiley and the
#Haemophilia
editorial team thank you for your continued support!
#Treatmentforall
COVID-19 vaccination guidance for people with bleeding disorders is now available; developed by the Coagulation Product Safety, Supply and Access Committee of the WFH in collaboration with EAHAD, EHC, and NHF. Information will be updated as needed.
Last week the global
#bleedingdisorders
community was able to come together for our
#WFHVirtualSummit
like never before! We were able to connect 8500 participants from 159 different countries to engage with 175 speakers for a total of 55 sessions. Thank you all for participating!
Factor levels alone don't reveal the whole picture. Ever wondered why one person with moderate
#hemophilia
bleeds more or less than another?
@LenValentino1
, MD, sheds light on the distinction between factor levels and phenotype.
#WFHCongress2024
Thank you to all who joined us for an inspiring
#WFHVirtualSummit
. We’re grateful to have had so many members of the
#bleedingdisorder
community join us from around the world!
20-year progress & findings of WFH Annual Global Survey published in
#Haemophilia
. This publication highlights the increase in number of patients identified over the last 20 years, as well as the improvements in care. Read the full survey here:
#hemophilia
It’s official! Registration for the
#WFHVirtualSummit
: Connecting the Global Bleeding Disorders Community is now open! This FREE event will feature live & recorded sessions from June 14-19. Increase your knowledge from home. Register today:
#hemophilia
The first-ever WFH Global Summit on Women and Girls with Inherited Bleeding Disorders will be held on Nov 19 & 20! Join us for this important virtual event to learn and hear about women's experiences living with a bleeding disorder. Register:
#hemophilia
📢 We are excited to announce the launch of the WFH Gene Therapy Registry (GTR)! We hope this registry will contribute to the long-term safety and efficacy of gene therapy for people with
#hemophilia
. Find out more:
The WFH is proud to announce wonderful news on World Hemophilia Day: the WFH will be collaborating with St. Jude Children’s Research Hospital in order to establish a gene therapy clinical trial for hemophilia patients in low- and middle-income countries.
COVID-19 restrictions are lifting, and Montreal is no exception! WFH and CHS are pleased to announce the 2022 World Congress will take place as scheduled, in person in Montreal with select sessions offered on our virtual platform this May 8-11. Learn more:
Gene therapy has great potential, but variable results in clinical trials have led to discussions on value and reimbursement. "Reimbursing the value of gene therapy care in an era of uncertainty" published in
#Haemophilia
offers insights on this conundrum.
Our
#WFHVirtualSummit
a FREE live event for the
#bleedingdisorder
community kicks off today! With
#medical
and multidisciplinary sessions, our professional track, and there's also an innovative center, exhibition booths and group discussions. Register now:
Questions about COVID-19 vaccines for people with a bleeding disorder? Watch a video—narrated by Radoslaw Kaczmarek, WFH Coagulation Product Safety, Supply, and Access (CPSSA) Committee chair (Poland/USA)—that covers everything you should know.
#hemophilia
#RareDiseaseDay
is a call for people living with a rare disease to have equal opportunities to realise their full participation in family, work and social life! This is a day for our
#bleedingdisorders
community to share your
#rare
colours! Learn more:
It’s been 10 days since the 2018 WFH World Congress wrapped up in Glasgow Scotland. Session recaps, congress highlights, photos and calls to action are all available online! To browse the official online news source for
#WFHcongress2018
visit:
Clinical trials generally provide the strongest evidence, but “we need to be more holistic when considering
#hemophilia
. It is such a rare disease that often we do not get statistically significant trial results.”
-Jamie O’Hara, Haemophilia Society, U.K.
The theme of this year’s
#WorldHemophiliaDay
is “Adapting to change: sustaining care in a new world”. Watch Cesar Garrido, WFH President , talk about the importance of this day and get free downloadable resources by visiting the full article here:
It is with great sadness that the WFH learned of the recent passing of Val Bias, former CEO of NHF, and a strong advocate for international cooperation. Read more here:
#hemophilia
Our new WFH website and logo are now live! This new site is modern, user-friendly and provides easy access to all the available tools and resources that our community needs to succeed! Check out our newly launched website and WFH logo here:
Explore a program built for
#women
and girls! This July, join the
#bleedingdisorders
community for two and a half days of discussion and exchange around
#WGBD
, quality of life, access to care, stigmatization, and advocacy. Full program now available here:
Our
#WorldHemophiliaDay
2021 Social Media toolkit is now live! Check out all the tools you can use to fill your feed with
#WHD2021
images and messages, and join the global WHD thread online:
#hemophilia
Today is International Women & Girls in Science Day, a reminder of the vital role that female scientists play in driving innovation and progress. Their contributions are vital to our effort to support the
#BleedingDisorders
community. Let's take a moment to honour their success!
It is with great sadness that the WFH learned of the passing of Victor Stanley Blanchette, MD, Medical Director of the Paediatric Thrombosis and Haemostasis Program at SickKids (Toronto). Our deepest sympathies to his family members, friends & colleagues.
From all of us at the WFH we wish you a happy
#WHD2022
!
Join the
#WorldHemophiliaDay
conversation online, share your experiences on our story site, and tell the world how you are raising awareness and advocating for inherited
#BleedingDisorders
!
📢The program at a glance for the WFH Global Summit on Women and Girls with Bleeding Disorders is now available! Join us virtually, on Sept 28-29, for two days of insightful discussions, presentations, and learning. Register now!
#WGBD2023
#genderequity
The WFH expresses solidarity with the Palestinian and Israeli bleeding disorders communities and with all people impacted by the Israel-Palestine crisis. We wish for safety and peace for both communities.
#hemophilia
The Lancet Haematology has published an editorial praising WFH accomplishments. The article mentions the WFH Virtual Summit, the AGS, the WFH Humanitarian Aid Program and the WFH Guidelines for the Management of Hemophilia. Read more:
#hemophilia
The WFH has spearheaded a scientific study updating the prevalence of
#hemophilia
to higher numbers than previously estimated and providing, for the first time, estimates of the prevalence of hemophilia at birth.
#bleedingdisorders
How do you know you have von Willebrand Disease? You might experience one or more of these symptoms. Keep in mind that your normal is not necessarily normal!
#WorldHemophiliaDay
Participants of the “Pain in women and girls with
#bleedingdisorders
” session learned the different ways pain impacts WGBD and ways to mitigate both physical and emotional pain.
#WFHCongress2022
🎥
@cesargarridod
, President of the WFH, warmly invites the international community to the Summit on Comprehensive Care! Learn about new advances in bleeding disorders and musculoskeletal issues from experts worldwide. Don't miss out!
#wfhCCS
In Kate Khair’s words: “The work the WFH does is incredibly important and their motivation is always the patients they help. For less than the price of a daily coffee, together we can make a difference.” Read about her story here:
#hemophilia
An outstanding panel of experts discussed possible models of payment for gene therapy for hemophilia at the 2nd WFH Gene Therapy Round Table. Thank you to all the experts who shared their expertise, helping to advance our vision of
#Treatmentforall
Congratulations to Geneviève McCluskey and Rodrigo Núñez-Cortés for winning the Christine Lee Young Researcher Award best oral and best poster respectively!
#WFHCongress2024
The WFH logo is changing! Today, we are excited to share that we are updating our logo and we will launch a new website early next year. Our new branding will reflect the modern organization we are today. Find out more:
That’s a wrap on
#WFHCongress2022
! After 4 long years, we thank all our delegates, speakers, sponsors, and partners, both in-person and virtually, for making this year’s Congress a great success. See you in Buenos Aires in 2023 and Kuala Lumpur in 2024!
The majority of people living with a bleeding disorder haven’t been diagnosed. This
#WorldHemophiliaDay
, take action to help us push for change. Stand with the global bleeding disorders community and give today.
The WFH is in Central America this week for a 3-day lab workshop! 19 lab specialists will receive training on diagnostic techniques for hemophilia, vWD and inhibitors. They come from 8 countries and represent 17 hospitals currently treating
#bleedingdisorders
.
#Treatmentforall
The WFH looking forward to seeing you in person soon. Our next Regional Congress will be held in Buenos Aires, followed by the MSK Congress. The WFH 2022 World Congress will take place in Montreal, Canada. Stay tuned!
#WFHVirtualSummit
#hemophilia
The WFH is pleased to announce that
@CSLBehring
has signed a new partnership with the WFH Humanitarian Aid Program which will include a donation of 500M IUs of factor. The donation will include product manufactured to have a longer shelf life.
#hemophilia
We are excited to share an increase in the Haemophilia Journal 2020 Impact Factor to 4.287! We would like to sincerely thank Dr. Cedric Hermans, editor-in-chief, and his team for their hard work, as well the authors, reviewers and readers for their part in this achievement.
Alain Baumann, CEO of the WFH, talks about bringing the bleeding disorders community together virtually for the very first time through the WFH Virtual Summit: Connecting the Global Bleeding Disorders Community, June 14 - 19. Watch the video:
#hemophilia
Cesar Garrido was elected as President of the WFH at the 2020 Annual Meeting of the General Assembly held virtually on October 16. Read about the goals he has for his new role, and the challenges he expects to face:
#hemophilia
The WFH Congress team is already hard at work preparing for the next World Congress in 2020. This key event for the
#bleedingdisorders
community will take place at the
@KLConvention
Centre in Kuala Lumpur, Malaysia’s capital, from June 14 to 17, 2020.
WOMEN AND BLEEDING DISORDERS - The WFH is proud to be part of the very first European conference on women and bleeding disorders! If you are in Frankfurt, come meet us at the WFH symposium! Join us for a panel discussion and exchange today 4:30 to 6pm!
#TreatmentforAll
#WBDEHC
The new WFH Treatment Guidelines (TG) Resource Hub has all the TG derived materials in one place! Find key info pieces for persons with
#hemophilia
and health care providers: Thank you to Hemophilia Alliance for their support developing this presentation.
#ICYMI
For over three decades, the 2018 recipient Thomas Sannié has worked tirelessly on behalf of those living with a bleeding disorder in his home country of France, as well as Africa & across the globe.
The difference between women and girls with
#bleedingdisorders
and non-affected women are colossal, demonstrating how delays in diagnosis can be harmful. Learn how these issues can be addressed:
#TreatmentForAll