NEWS


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Be sure to check back regularly to get our latest news updates.


NHF's Wednesday Webinars for March 2021 will feature an array of speakers and topics of interest to both healthcare providers and patients and families with blood disorders alike.

March Webinars
All webinars are from 2:00pm-3:00pm ET.

 

March 3, 2021

Cellular Therapies for Hemophilia 

Speakers: Amy Shapiro, MD, Indiana Hemophilia & Thrombosis Center, Inc. and Deya Corzo, MD, Sigilon Therapeutics

 

The U.S. Food and Drug Administration (FDA) has partially rescinded a pair of supplemental Biologics License Applications (BLAs) the agency had granted, in error, for two recombinant factor IX products, BeneFIX® (Pfizer) and IXINITY (Aptevo). The supplemental BLAs in question were both approved by the FDA in 2020 and represented additional indications that ultimately ran against exclusivity rights of another product.   

Background:

Fitusiran is an RNA drug that can prevent antithrombin protein from being made in the liver. Antithrombin is an important brake for the coagulation system. Insufficient amounts of circulating antithrombin in normal adults lead to thrombosis. In persons with hemophilia (PWH) A or B, who don’t have sufficient clotting, lowering antithrombin with fitusiran has been shown to increase coagulation and protect PWH from bleeding. It is presently in Phase 3 clinical trials.

Octapharma recently announced the final results from the NuProtect study, which evaluated the immunogenicity of Nuwiq® in previously untreated patients (PUPs) with severe hemophilia A.Nuwiq® is a recombinant factor VIII therapy, is indicated for on-demand treatment and control of bleeding episodes and routine prophylaxis to reduce the frequency of bleeding episodes and perioperative m

Spark Therapeutics announced preliminary data from part one of their ongoing phase 1/2 open-label, non-randomized, dose-finding study of SPK-8016, the company’s investigational gene therapy for hemophilia A.

Come the Spring of 2021 patients and caregivers will be presented with a new opportunity to provide valuable feedback on the care they receive at hemophilia treatment centers (HTC) across the United States.

NHF's Wednesday Webinars for February 2021 will feature an array of speakers and topics of interest to both healthcare providers and patients and families with blood disorders alike.

February Webinars
All webinars are from 2:00pm-3:00pm ET.

On January 28th, 2021, President Biden signed an executive order aimed at stabilizing and strengthening the Affordable Care Act (ACA) and Medicaid. The President specifically stated that this order does not change any law but rather rolls back actions taken by the Trump administration over the last four years.

BioMarin recently announced positive updates from its ongoing phase 3 GENEr8-1 study of valoctocogene roxaparvovec, an investigational gene therapy for the treatment of adults with severe hemophilia A. The trial currently includes 134 participants, all of whom have received a single dose of the therapy and have been observed for at least one year post treatment.

CSL Behring has announced a voluntary pharmacy level product recall of one batch of Mononine Coagulation Factor IX (Human), a plasma-derived product used to treat hemophilia B. CSL Behring’s notification states, “Patients can continue to use product they may have. Although the potential for safety risk to patients is considered low, it cannot be fully excluded.”

The affected batch is identified as: P100125501

The new joint clinical practice guidelines on the diagnosis and management of von Willebrand disease, developed by the American Society of Hematology (ASH), the International Society of Thrombosis and Haemostasis (ISTH), the National Hemophilia Foundation (NHF), and the World Federation of Hemophilia (WFH) now have snapshot guides available in English, Spanish, and French.

The snapshots provide a high-level summary of both the diagnosis and management of VWD.

 

The new joint clinical practice guidelines on the diagnosis and management of von Willebrand disease, developed by the American Society of Hematology (ASH), the International Society of Thrombosis and Haemostasis (ISTH), the National Hemophilia Foundation (NHF), and the World Federation of Hemophilia (WFH) now have snapshot guides available in English, Spanish, and French.

The snapshots provide a high-level summary of both the diagnosis and management of VWD.

 

“From Principles to Practice: Preparing for the Advent of Gene Therapy” represents the newest educational activity in Medscape’s series “Clinical Advances in Gene Therapy for Hemophilia.” Presented through a collaboration between Medscape and the National Hemophilia Foundation, the series includes various discussions relevant to the latest data on gene therapy as well as the practicalities associated with using gene therapy for hemophilia.

“From Principles to Practice: Preparing for the Advent of Gene Therapy” represents the newest educational activity in Medscape’s series “Clinical Advances in Gene Therapy for Hemophilia.” Presented through a collaboration between Medscape and the National Hemophilia Foundation, the series includes various discussions relevant to the latest data on gene therapy as well as the practicalities associated with using gene therapy for hemophilia.

Organizations Collaborate to Develop International State-of-the-Art Guidelines on the Diagnosis and Management of von Willebrand Disease
bmarshall
Jan 11, 2021

Jan 11, 2021

 The American Society of Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), National Hemophilia Foundation (NHF), and World Federation of Hemophilia (WFH) have developed joint clinical practice guidelines on the diagnosis and management of von Willebrand disease (VWD), the world’s most common inherited bleeding disorder. The guidelines were published today in Blood Advances.

VWD affects approximately 1% of the world’s population, and it is the most common bleeding disorder. Although VWD occurs among men and women equally, women are more likely to notice the symptoms because of heavy or abnormal bleeding during their menstrual periods and after childbirth. This inherited condition results in the decreased production, absence, or abnormal function of the clotting protein von Willebrand factor.

VWD can cause unusual bleeding from small wounds or minor procedures, frequent nosebleeds, bruising, bleeding in joints, and heavy menstrual periods and post-partum bleeding in women. Symptoms may vary from patient to patient or in a single patient over the course of his or her life. Primary care providers, pediatricians, obstetricians, and gynecologists who observe unusual bleeding often refer their patients to a hematologist for further testing and management. Many individuals with mild symptoms do not receive a diagnosis right away and live for many years with untreated bleeding or do not realize they have VWD until they experience a severe bleed that could have been prevented.

“While VWD is a common bleeding disorder, it is also complex, presenting challenges in the timely diagnosis and appropriate management of bleeding for patients,” said 2021 ASH President Martin S. Tallman, MD, of Memorial Sloan Kettering Cancer Center.  “Because diagnosis is not straightforward and symptoms range in severity, there is a need for trustworthy guidelines to help improve the quality of care for patients. There are no better partners for ASH in this effort than ISTH, NHF, and WFH, whose collective expertise in VWD from the scientific and patient perspectives around the world enhanced this effort.”

Notably, the guidelines make key statements on thresholds of laboratory testing to classify VWD to be more inclusive of patients who experience bleeding, but whose blood work does not meet currently accepted thresholds for diagnosis. In addition, the guidelines for the first time recommend that VWD patients who suffer from frequent, severe bleeding that decreases quality of life should receive routine VWD prophylaxis – an injectable concentrate of clotting protein – several times a week. Together, the guidelines on diagnosis and management include a combined 19 recommendations.

The guidelines were developed by two expert panels made up of 32 individuals, including U.S.-based and international hematologists, individuals living with VWD, and scientists with expertise in evidence synthesis and appraisal and guideline development methodology. Clinical questions were developed by the panels and prioritized, and an international survey was completed to identify the most important clinical questions. A systematic review of available evidence was conducted by the University of Kansas Medical Center and the panel referred to this evidence to make recommendations. This process shed light on the lack of strong evidence on which to base recommendations, and therefore the report calls for more research.

“These guidelines are an excellent example of collaboration across multiple societies ensuring that the guidelines develop represent the most up to date and relevant advice about diagnosis and treatment of this common, but often misunderstood bleeding disorder,” said ISTH Past President Claire McLintock, MD. “Working as part of the incredible team that developed the guidelines in diagnosis of VWD was hugely rewarding and inspiring.”

People with VWD made up approximately one quarter of each guideline panel’s composition. As full voting members they contributed their expertise to every aspect of the rigorous guideline development process, from the prioritization of clinical questions, through the evaluation of the available evidence, to the consideration of factors such as stakeholder values and preferences, equity, and feasibility. Their involvement, actively supported by the panel chairs and collaborating organizations, was critical to ensuring the development of recommendations with the greatest pertinence and in which the community will have great confidence. Collaboration with WFH and NHF was essential to engaging the broader VWD patient community.

With their extensive established functional networks with healthcare professionals in centers for comprehensive care of bleeding disorders and patient organizations throughout the US and around the world, the four collaborating organizations, ASH, ISTH, NHF, and WFH will all play important roles in the creation and dissemination of resources based on the guidelines, and their implementation in individual care and broader advocacy efforts.

“These guidelines are an extremely important step in our quest to address the difficulties individuals go through to obtain an accurate, timely diagnosis, and appropriate treatment.  The challenge ahead will be for us to educate both those living with VWD and healthcare professionals on the guideline recommendations,” said Leonard Valentino, MD, President and CEO of NHF. “We were excited to work with ASH, ISTH, and WFH to create these and introduce them to the community.”

“In 2017 we gathered members of the global VWD community for the first WFH International Symposium on VWD. Delegates from countries around the world told us that the number one tool they needed in order to provide comprehensive care to people with VWD was clinical practice guidelines,” explained WFH President Cesar Garrido. “The WFH is very proud to deliver these guidelines today, with our partners from ASH, ISTH, and NHF, to the global community. In addition to offering guidance for clinicians and individuals with VWD as they partner in personalized care decisions, they constitute the foundation for important advocacy initiatives to improve access to the recommended diagnostic techniques and treatment options in all countries.”

The publication of the guideline will be accompanied by tools and educational resources to help patients, hematologists and other health care providers understand and implement the recommendations.

Related links about the new VWD guidelines:

•    VWD guidelines in Blood Advances

•    ASH resources

•    ISTH resources

•    NHF resources

•    WFH resources

About the American Society of Hematology

The American Society of Hematology (www.hematology.org) is the world’s largest professional society of hematologists dedicated to furthering the understanding, diagnosis, treatment, and prevention of disorders affecting the blood. For more than 60 years, the Society has led the development of hematology as a discipline by promoting research, patient care, education, training, and advocacy in hematology. ASH publishes Blood (www.bloodjournal.org), the most cited peer-reviewed publication in the field, and Blood Advances (www.bloodadvances.org), an online, peer-reviewed open access journal. For more information about ASH’s portfolio of clinical practice guidelines, visit www.hematology.org/guidelines.

About the International Society of Thrombosis and Haemostasis

Founded in 1969, the ISTH is the leading worldwide not-for-profit organization dedicated to advancing the understanding, prevention, diagnosis and treatment of thrombotic and bleeding disorders. ISTH is an international professional membership organization with more than 7,700 clinicians, researchers and educators working together to improve the lives of patients in more than 110 countries around the world. Among its highly regarded activities and initiatives are education and standardization programs, research activities, meetings and congresses, peer-reviewed publications, expert committees and World Thrombosis Day on 13 October. Visit ISTH online at www.isth.org.


About the National Hemophilia Foundation

NHF (the National Hemophilia Foundation) is a 501(c)(3) nonprofit organization dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. NHF’s programs and initiatives are made possible through the generosity of individuals, corporations and foundations, as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC). Additional information on hemophilia and NHF can be found at www.hemophilia.org.

About the World Federation of Hemophilia

For over 50 years, the World Federation of Hemophilia (WFH), an international not-for-profit organization, has worked to improve the lives of people with hemophilia and other inherited bleeding disorders. Our vision of Treatment for All is that one day, all people with a bleeding disorder will enjoy a more certain future filled with promise, no matter where they live. For decades, we have been working around the world to improve diagnosis, treatment and ensure patients have sustainable access to care. We have a responsibility to deliver life-changing programs and services. Established in 1963, the WFH is a global network of patient organizations in 147 countries and has official recognition from the World Health Organization. Visit WFH online at www.wfh.org.

 

 

Organizations Develop Guidelines on the Diagnosis and Management of VWD
bmarshall
Jan 11, 2021

Jan 11, 2021

 The American Society of Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), National Hemophilia Foundation (NHF), and World Federation of Hemophilia (WFH) have developed joint clinical practice guidelines on the diagnosis and management of von Willebrand disease (VWD), the world’s most common inherited bleeding disorder. The guidelines were published today in Blood Advances.

VWD affects approximately 1% of the world’s population, and it is the most common bleeding disorder. Although VWD occurs among men and women equally, women are more likely to notice the symptoms because of heavy or abnormal bleeding during their menstrual periods and after childbirth. This inherited condition results in the decreased production, absence, or abnormal function of the clotting protein von Willebrand factor.

VWD can cause unusual bleeding from small wounds or minor procedures, frequent nosebleeds, bruising, bleeding in joints, and heavy menstrual periods and post-partum bleeding in women. Symptoms may vary from patient to patient or in a single patient over the course of his or her life. Primary care providers, pediatricians, obstetricians, and gynecologists who observe unusual bleeding often refer their patients to a hematologist for further testing and management. Many individuals with mild symptoms do not receive a diagnosis right away and live for many years with untreated bleeding or do not realize they have VWD until they experience a severe bleed that could have been prevented.

“While VWD is a common bleeding disorder, it is also complex, presenting challenges in the timely diagnosis and appropriate management of bleeding for patients,” said 2021 ASH President Martin S. Tallman, MD, of Memorial Sloan Kettering Cancer Center.  “Because diagnosis is not straightforward and symptoms range in severity, there is a need for trustworthy guidelines to help improve the quality of care for patients. There are no better partners for ASH in this effort than ISTH, NHF, and WFH, whose collective expertise in VWD from the scientific and patient perspectives around the world enhanced this effort.”

Notably, the guidelines make key statements on thresholds of laboratory testing to classify VWD to be more inclusive of patients who experience bleeding, but whose blood work does not meet currently accepted thresholds for diagnosis. In addition, the guidelines for the first time recommend that VWD patients who suffer from frequent, severe bleeding that decreases quality of life should receive routine VWD prophylaxis – an injectable concentrate of clotting protein – several times a week. Together, the guidelines on diagnosis and management include a combined 19 recommendations.

The guidelines were developed by two expert panels made up of 32 individuals, including U.S.-based and international hematologists, individuals living with VWD, and scientists with expertise in evidence synthesis and appraisal and guideline development methodology. Clinical questions were developed by the panels and prioritized, and an international survey was completed to identify the most important clinical questions. A systematic review of available evidence was conducted by the University of Kansas Medical Center and the panel referred to this evidence to make recommendations. This process shed light on the lack of strong evidence on which to base recommendations, and therefore the report calls for more research.

“These guidelines are an excellent example of collaboration across multiple societies ensuring that the guidelines develop represent the most up to date and relevant advice about diagnosis and treatment of this common, but often misunderstood bleeding disorder,” said ISTH Past President Claire McLintock, MD. “Working as part of the incredible team that developed the guidelines in diagnosis of VWD was hugely rewarding and inspiring.”

People with VWD made up approximately one quarter of each guideline panel’s composition. As full voting members they contributed their expertise to every aspect of the rigorous guideline development process, from the prioritization of clinical questions, through the evaluation of the available evidence, to the consideration of factors such as stakeholder values and preferences, equity, and feasibility. Their involvement, actively supported by the panel chairs and collaborating organizations, was critical to ensuring the development of recommendations with the greatest pertinence and in which the community will have great confidence. Collaboration with WFH and NHF was essential to engaging the broader VWD patient community.

With their extensive established functional networks with healthcare professionals in centers for comprehensive care of bleeding disorders and patient organizations throughout the US and around the world, the four collaborating organizations, ASH, ISTH, NHF, and WFH will all play important roles in the creation and dissemination of resources based on the guidelines, and their implementation in individual care and broader advocacy efforts.

“These guidelines are an extremely important step in our quest to address the difficulties individuals go through to obtain an accurate, timely diagnosis, and appropriate treatment.  The challenge ahead will be for us to educate both those living with VWD and healthcare professionals on the guideline recommendations,” said Leonard Valentino, MD, President and CEO of NHF. “We were excited to work with ASH, ISTH, and WFH to create these and introduce them to the community.”

“In 2017 we gathered members of the global VWD community for the first WFH International Symposium on VWD. Delegates from countries around the world told us that the number one tool they needed in order to provide comprehensive care to people with VWD was clinical practice guidelines,” explained WFH President Cesar Garrido. “The WFH is very proud to deliver these guidelines today, with our partners from ASH, ISTH, and NHF, to the global community. In addition to offering guidance for clinicians and individuals with VWD as they partner in personalized care decisions, they constitute the foundation for important advocacy initiatives to improve access to the recommended diagnostic techniques and treatment options in all countries.”

The publication of the guideline will be accompanied by tools and educational resources to help patients, hematologists and other health care providers understand and implement the recommendations.

Related links about the new VWD guidelines:

•    VWD guidelines in Blood Advances

•    ASH resources

•    ISTH resources

•    NHF resources

•    WFH resources

About the American Society of Hematology

The American Society of Hematology (www.hematology.org) is the world’s largest professional society of hematologists dedicated to furthering the understanding, diagnosis, treatment, and prevention of disorders affecting the blood. For more than 60 years, the Society has led the development of hematology as a discipline by promoting research, patient care, education, training, and advocacy in hematology. ASH publishes Blood (www.bloodjournal.org), the most cited peer-reviewed publication in the field, and Blood Advances (www.bloodadvances.org), an online, peer-reviewed open access journal. For more information about ASH’s portfolio of clinical practice guidelines, visit www.hematology.org/guidelines.

About the International Society of Thrombosis and Haemostasis

Founded in 1969, the ISTH is the leading worldwide not-for-profit organization dedicated to advancing the understanding, prevention, diagnosis and treatment of thrombotic and bleeding disorders. ISTH is an international professional membership organization with more than 7,700 clinicians, researchers and educators working together to improve the lives of patients in more than 110 countries around the world. Among its highly regarded activities and initiatives are education and standardization programs, research activities, meetings and congresses, peer-reviewed publications, expert committees and World Thrombosis Day on 13 October. Visit ISTH online at www.isth.org.


About the National Hemophilia Foundation

NHF (the National Hemophilia Foundation) is a 501(c)(3) nonprofit organization dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. NHF’s programs and initiatives are made possible through the generosity of individuals, corporations and foundations, as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC). Additional information on hemophilia and NHF can be found at www.hemophilia.org.

About the World Federation of Hemophilia

For over 50 years, the World Federation of Hemophilia (WFH), an international not-for-profit organization, has worked to improve the lives of people with hemophilia and other inherited bleeding disorders. Our vision of Treatment for All is that one day, all people with a bleeding disorder will enjoy a more certain future filled with promise, no matter where they live. For decades, we have been working around the world to improve diagnosis, treatment and ensure patients have sustainable access to care. We have a responsibility to deliver life-changing programs and services. Established in 1963, the WFH is a global network of patient organizations in 147 countries and has official recognition from the World Health Organization. Visit WFH online at www.wfh.org.

 

 

New Research Fellowship Available from NHF
bmarshall
Jan 11, 2021

Jan 11, 2021

The National Hemophilia Foundation has created a new research fellowship that seeks to create greater diversity in the field of benign hematology with the Jeanne M. Lusher Diversity Fellowship (JML). The fellowship, which hopes to foster career-long interest in inheritable bleeding and blood disorders, is open to Black, Indigenous, and people of color (BIPOC) who are enrolled in a doctoral program in a biomedical field relevant to blood disorders. The goal of the fellowship is to identify clinicians from under-represented communities and genders early in their career and establish an interest in inheritable bleeding and blood disorders that will sustain them throughout their careers.

The fellowship honors the distinguished legacy of Dr. Jeanne M. Lusher, a pioneering clinician and researcher who died in 2016. Dr. Lusher’s tremendous impact on the bleeding disorders community began in 1961 when she helped to diagnose a young girl with a rare instance of hemophilia. As a researcher, she focused on inhibitor development in factor VIII patients. Along with a colleague, she was the first to identify inhibitors as antibodies to factor VIII in 1966. She authored more than 270 peer-reviewed papers, nine books and more than 60 book chapters. Dr. Lusher served as chair of NHF’s Medical and Scientific Advisory Council (MASAC) from 1994-2000.

“Dr. Lusher was a tremendous mentor to young hematologists who wanted to work with patients with bleeding disorders,” said Michelle Wiktop, DNP, NHF’s head of research.  “We hope this new fellowship will eventually create a research community that  reflects the diversity of the patient community we serve.”

More information on the JML Fellowship, including how to apply, can be found here.

The National Hemophilia Foundation has created a new research fellowship that seeks to create greater diversity in the field of benign hematology with the Jeanne M. Lusher Diversity Fellowship (JML). The fellowship, which hopes to foster career-long interest in inheritable bleeding and blood disorders, is open to Black, Indigenous, and people of color (BIPOC) who are enrolled in a doctoral program in a biomedical field relevant to blood disorders.

The National Hemophilia Foundation has created a new research fellowship that seeks to create greater diversity in the field of benign hematology with the Jeanne M. Lusher Diversity Fellowship (JML). The fellowship, which hopes to foster career-long interest in inheritable bleeding and blood disorders, is open to Black, Indigenous, and people of color (BIPOC) who are enrolled in a doctoral program in a biomedical field relevant to blood disorders.

 The American Society of Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), National Hemophilia Foundation (NHF), and World Federation of Hemophilia (WFH) have developed joint clinical practice guidelines on the diagnosis and management of von Willebrand disease (VWD), the world’s most common inherited bleeding disorder.

 The American Society of Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), National Hemophilia Foundation (NHF), and World Federation of Hemophilia (WFH) have developed joint clinical practice guidelines on the diagnosis and management of von Willebrand disease (VWD), the world’s most common inherited bleeding disorder.

Looking Ahead to 2021
bmarshall
Jan 8, 2021

Jan 8, 2021

As we look ahead into the new year, and the changes it will bring, I’ve been reflecting on the importance of the events of 2020 and what we have learned. This past year, tumultuous and strange as it was, has taught us all some lessons that will guide me, NHF, and the bleeding disorders community in the years ahead.

The first lesson is how important it is to be in regular communication with you. The past year has been one where clear and unambiguous communication of facts has never been more relevant. At the outset of the coronavirus pandemic, we instituted a series of webinars that sought to answer your questions, help you find resources, and increase your understanding of how this virus was affecting our community. In 2021, we will continue this series each Wednesday, bringing you not only the latest information we have about COVID-19, but also information on new vaccines and treatments for coronavirus, new developments in the diagnosis and treatment of bleeding disorders, research into women with bleeding disorders, our approach to overcoming health inequities in the bleeding disorders community and much more.

The second lesson is that it is ever more critical that we listen to you, our community members. We are in an era of transformational discovery in bleeding disorders treatment and care. Gene therapy and nonfactor therapies will change our understanding of what it means to live with a bleeding disorder. But to fully understand it, we must make sure that you—the people who live with a bleeding disorder and your family members—are involved every step of the way. In 2021, we will put a major emphasis on understanding the gaps in care you experience and working with you and our entire community to close those gaps through research. We are currently assembling working groups to discuss, debate and plan the direction of research into bleeding disorders. In September 2021, we will be holding a State of the Science Summit that will bring researchers, healthcare providers, pharmaceutical and biotech companies, and you, together to prioritize and finalize plans for future research. Your voice and active participation along the journey are key to its success. The voice of the community must be at the center of bleeding disorders research. Therefore, I invite each of you to consider participating and contributing to this important work. Look for future news about how you can get involved in surveys, discussion groups and the summit.

The third and most important lesson 2020 provided me is that it is imperative that we expand our reach within the bleeding disorders community. This pandemic, and who bore the greatest burden, has made clear the appalling inequity in access to healthcare in our country – and the care of people with bleeding disorders is no exception. We must guarantee that people of color, people from underserved areas, those who don’t have financial resources to pay for medications and services, and women with bleeding disorders have the same access to treatment and services, are included in research, are welcomed and represented in our chapters, and most important, that their concerns and needs are heard and acted upon.

All these lessons have provided the imperative that NHF must widen our community. In over 35 years as a hematologist, I treated people with hemophilia and von Willebrand disease, but I also treated people with other blood disorders who didn’t have the array of treatment options, research opportunities, clinical services and support that many of you have access to. There are people with rare bleeding disorders, people with sickle cell disease, platelet disorders and Glanzmann’s thrombasthenia, thrombocytopenia, thalassemia, venous thrombosis and other inherited blood disorders who are treated at hemophilia treatment centers yet are not part of our community. In 2021, we will be reaching out to advocacy organizations along with people with these disorders, healthcare providers, and researchers to understand how we can work together to improve the lives of not just people with bleeding disorders, but people with blood disorders. We have a vision of a world without inheritable blood disorders.  We will strive to move our mission to finding cures for inheritable blood disorders and to addressing and preventing the complications of these disorders through research, education, and advocacy, enabling people and families to thrive. Together, with open, direct and honest communication and a renewed focus on research, that includes all members of our community, we can make that mission and vision a reality. Come along with us on this journey—together we are stronger and together we have a louder voice!

Peace and prosperity,



Leonard A. Valentino, MD

A Message from NHF President and CEO Leonard A. Valentino, MD
bmarshall
Jan 8, 2021

Jan 8, 2021

Dear Community,

 

Not a big surprise that the turning of the page in the calendar did not make all our worries go away. The big stories that consumed our thoughts at the end of last year—the election, the pandemic, and racial inequity—carried over and, in the case of the election, boiled over.

 

On January 6th, many of us watched with shock what was occurring in Washington, DC. Regardless of your political beliefs, I’m sure you were as stunned as I was to see thousands of people storming the hallowed halls of our government. I’m angry, saddened, embarrassed, and appalled at the shameful violence and those who took part in this unacceptable behavior. We have also seen similar displays at state capitols throughout the country.  

 

It also made me think about the history of activism in our community. In the 1990s, after thousands of our community members were ravaged by HIV/AIDS, our community protested —angrily, righteously—but peacefully. In a time when bipartisan divisions were high, our community members worked with both Republicans and Democrats not only on the passage of the Ricky Ray Hemophilia Relief Act, but to ensure that our blood and blood products would remain safe for all Americans for generations to come. In doing so, we earned the respect of lawmakers, staff, and set a template for other patient advocacy organizations to enact change at the Federal level.

 

What we witnessed on January 6th was not advocacy. It was a degradation of the freedoms enshrined in the Bill of Rights —to speak without censure from the government, to peacefully assemble. It was an attempt by a small fraction of Americans to subvert the will of the people and our democratic process.

But Congress reassembled in the Capitol that same evening to finish its Constitutional duty to officially certify the Electoral College vote. In one day, we watched a serious threat to our democracy matched by the resilience of our lawmakers and those working to protect it.

We’ve experienced many dark moments together over the past 10 months. All of you have personally experienced disruption and loss but please know that I and the NHF team are here for you, and that you can always reach out directly to me or anyone at NHF if you are feeling stress, especially if it’s affecting your health. We are in this together and are willing to lend support where we can.

Even with all of this, I still have a positive outlook for  2021. I draw inspiration from our history of advocacy, working together to create positive change. That is the spirit that I hope our community will embrace as we prepare to work with a new Administration and Congress in 2021. I hope you will join us at Washington Days in March as we continue to work to ensure access to care for our community.

 

 We will continue to support each other as we journey through 2021.

Stay safe,

Leonard A. Valentino, MD

Dear Community,

 

Not a big surprise that the turning of the page in the calendar did not make all our worries go away. The big stories that consumed our thoughts at the end of last year—the election, the pandemic, and racial inequity—carried over and, in the case of the election, boiled over.

 

Dear Community,

 

Not a big surprise that the turning of the page in the calendar did not make all our worries go away. The big stories that consumed our thoughts at the end of last year—the election, the pandemic, and racial inequity—carried over and, in the case of the election, boiled over.

 

News

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