If you want to be in the know about what’s going on at our organization, you’ve come to the right place!
Being kind to a stranger may seem simple, but it often requires a conscious effort to do. How can you show kindness to strangers in your life? We have 9 ideas to start.
How can you make a difference in the world? By reducing your carbon footprint. Check out these easy ways you can lessen your environmental impact and help save the earth.
A mentorship program has more in store than just for the mentee. If you’re not sure whether mentoring is right for you, take a look at these eight ways becoming a mentor can benefit you.
Tomorrow, September 12th, commemorates America’s favorite frothy chocolate drink in a way which brings together chocolate and ice cream lovers alike.
Whether you choose to volunteer at a local shelter, support military service personnel or donate to a cause you care about, your Labor Day can be focused on honoring those who have worked so hard to build up our country’s economic and political well being.
While quotes might not directly stimulate our own lives, they play a significant role in encouraging a positive lifestyle. So go ahead, discover inspiration.
When it comes to living an altruistic lifestyle, compassion for others doesn’t have to stop with humans.
Coffee has been around for thousands of years, but it hasn’t been until recently that we’ve discovered just how many incredible benefits it actually has.
This back-to-school season, do more than simply prepare for a new school year—help those in need!
Summer can often feel too short, but with this list of potential activities, you’re sure to fill your days with activities that turn into fond memories.
When you have an efficient morning routine, you set an effective tone for the rest of the day. Here are five ways to establish a productive morning routine.
Setting goals is simple. We’ve all heard different phrases, acronyms and ways to properly set a goal for life. However, accomplishing goals can be a whole different task.
The month of July is full of great things: Independence Day, baseball and… hot dogs. In fact, July is recognized as National Hot Dog Month. That’s right, the little sausage has an entire month dedicated to its celebration.
Planning an Independence Day party shouldn’t have to be stressful. We’ve compiled a list of everything you need—from food to activities—to throw a bash your friends and family will rave about.
Whether they’re familial, romantic or platonic, relationships are vital to beneficial and stable lives. So how can we learn to build positive and enriching relationships? Take a look at these top eight tips for some ideas.
This summer, take some time to enjoy a vacation. Whether it’s three days or three weeks, at home or across the world, throw yourself into the moment and use it as an opportunity to relax, regrow and reconnect with your loved ones.
This Father’s Day, give Dad the best gift: a caring, compassionate life. See how you can support others around you and give back this Sunday.
How can you and your family celebrate June? By trying out some of these easy and delicious options to celebrate National Fresh Fruits and Vegetables Month.
Federal Updates:
Pfizer has announced positive results from their global phase 3 BASIS clinical study of marstacimab, the company’s investigational, subcutaneous therapy that targets an anticoagulant protein known as tissue factor pathway inhibitor (TFPI).
This Memorial Day, we remember and honor the men and women who have served our country’s armed forces—specifically those who have given the ultimate sacrifice.
Dear National Hemophilia Foundation Community, Staff and Friends,
When Saylor Behrens' biology professor told her class that hemophilia is the result of incest, she grew angry. She knew better. Her younger brother, Wyatt, has hemophilia A.
It wasn't just the false narrative being spread that made her indignant- it was the sheer lack of awareness about hemophilia that morphed her brother's bleeding disorder into a scary, incredibly rare condition that could be brushed off.
If you try to live altruistically, then combating your own loneliness can play a vital role in how you serve others. Here’s how to overcome loneliness in everyday life.
Teenagers are our future; by building them up and encouraging them—even if they’re not our own children—we can create a better future for generations to come.
Every day, chapters across the country work with the blood and bleeding disorders community around them. Since 2021, Jacob Murdock has served as Chapter Executive Director in Nevada. He took time out of his busy schedule to tell us why loves the Nevada Chapter.
How long has your Chapter been serving the community?
We were founded as the Hemophilia Foundation of Nevada in 1990. We became a national chapter of NHF in 2011. The chapter was founded by Renee Paper, a nurse and a pioneer in the treatment of women with bleeding disorders.
The Rare Diseases Diversity Coalition (RDDC) is currently seeking applicants for its 2023 Rare Disease Fellowship Program, which is aimed at inspiring the next generation of the medical workforce to work in the rare disease space and achieve greater health equity for people of color living with rare diseases.
The Fellowship allows rare disease organizations to collaborate with fellows to better understand the health impacts of that disease on communities of color. In addition, the Fellow will gain a greater awareness of the challenges of living with rare diseases
NHF’s Medical and Scientific Advisory Council (MASAC) recently issued four new documents, which are now available for easy access.
In July 2020 Ferring Pharmaceuticals suspended manufacturing of the nasal spray STIMATE®, a popular product used to treat certain bleeding disorders.
Between 2013-2017, the “My Life Our Future” (MLOF) project offered eligible individuals with hemophilia free genotyping, which is historically hard to access, expensive, and not covered by insurance.
If you strive to live an altruistic lifestyle, there are plenty of gifts you can give your loved one on Mother’s Day that also give back to others in the community.
Novo Nordisk has notified the National Hemophilia Foundation that they have received a Complete Response Letter (CRL) from the U.S. Food and Drug Administration (FDA) for their investigational, subcutaneous therapy concizumab.
Federal Updates:
While it might seem simple to say talents can help others, actually identifying your talents and putting them to good use can be a little bit more difficult.
FOR IMMEDIATE RELEASE
Ilana Ostrin
Senior Director of Public Relations and Communications
Paying it forward is a way to spread goodness into the world. If you want to get involved this International Pay It Forward Day, check out these ways to pay it forward.
The foundation's staff is comprised of dedicated people use their talents to help the blood and bleeding disorders community. One of them is Karina Lopez, MPH! Karina joined us to talk about her progression from an internship to a full-time position as a Project Management Specialist at the organization and one of the projects she's most proud of during her time here.
Watch the interview or read the full conversation below.
Turns out, even the smallest steps can have an impact. This Earth Day, consider your ecological footprint and enact these seven green ways to embrace today.
Having everyone's perspectives is critical to forming solid research or a well-rounded program. But how do you get the perspectives of people who are not already be involved, whether by choice or circumstance? HEDI Program Specialist, Marissa Melton, starts a conversation on how to engage unengaged communities.
As NHF continues to celebrate it's 75th Anniversary, the organization sat down with community member Eldon Ham to learn more about his story.
For Immediate Release
Renee Peck
Pathway to Cures
rpeck@pathwaytocures.org
212-328-3790
New York, NY, February 27, 2023 – Pathway to Cures (P2C), a venture philanthropy fund focused on transformative treatments for inheritable blood disorders, announces the appointment of its investment committee.
If you want to live a more altruistic life, but aren’t sure where to start, then you’ve come to the right place. Here’s how to find a cause you care about.
Coalition Advocates for Substance Use Disorder/Behavioral Health Services for Patients With Bleeding Disorders
Sanofi recently announced that results of two clinical studies of their investigational therapy fitusiran were recently published in The Lancet and The Lancet Haematology journals. Both phase 3 trials were evaluating the efficacy and safety of fitusiran for the prophylactic treatment of adults and adolescents with hemophilia A or B. The enrolled participants, all of whom are 12 years of age and up, had been previously treated with existing factor replacement therapy or bypassing agent (BPA) prophylaxis.
Federal Updates:
Washington Days Recap: Nearly 400 volunteer advocates attended Washington Days March 8-10th and participated in 235 meetings with Members of Congress and staff. The focus of this year was soliciting cosponsors for H.R. 830, the HELP Copays Act, and securing level funding for the federal hemophilia programs.
During legislative session, NHF's chapter network, public policy staff, and the bleeding disorders community at large has been hard at work advocating across the United States! For the month of March, here are some advocacy and policy highlights from the beginning of this year:
To end Bleeding Disorders Awareness Month and celebrate National Doctors Day, Dr. Aaron Chen shares his story of how living with thalassemia inspired his calling as a physician. Watch his interview or read the full transcript below.
This month aims to increase awareness about stress, its negative effects and how to relieve it. If you’re experiencing stress, keep these ideas in mind for how to relax.
April is National Minority Health Month. To learn about the experiences of the bleeding disorders community in an island state, Chloe, a member of the communications team, sat down with Kyra Calbero, Interim Executive Director of the foundation's Hawaii chapter.
Watch a video below that summarizes the conversation, or read the whole transcript.
The foundation's staff is comprised of dedicated people use their talents to help the blood and bleeding disorders community.
A new member of the team is Chloe Fellwock, a communications assistant who joined began her tenure in June 2022. A member of the communications team sat down with her to talk about working this role as her first job out of college, what she's learned, and her favorite moments with the team.