Support Organizations and Information

The resources listed below may help you connect with the hemophilia community and learn more about the complexity of genetics and gene therapy research. The groups, agencies, and resources included in this list are independent organizations and are not affiliated with Spark^® Therapeutics. By clicking a link on this page, you are leaving the Hemophilia Forward^® website. Spark assumes no responsibility for any content you may encounter outside of this website.

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Hemophilia organizations

Hemophilia Federation of America

The HFA is a patient advocacy organization serving the rare bleeding disorders community through education, emergency assistance, scholarships, and more.

National Bleeding Disorders Foundation (formerly NHF)

Since 1948, NHF has supported people with inherited blood disorders through research, education, and advocacy. Visit their website to get the latest updates on research, treatments, events, and advocacy priorities.

The Coalition for Hemophilia B

The Coalition for Hemophilia B is a national nonprofit that has served the hemophilia B community for over 30 years. Become a member and apply for patient and travel assistance grants and more.

World Federation of Hemophilia

WFH is a nonprofit organization dedicated to improving and sustaining care for people with inherited bleeding disorders around the world. The organization works with healthcare providers, governments, and their global network of national member organizations in 147 countries.

HFA: Local Member Organization Directory

Find local organizations in each state.

Hemophilia Treatment Center (HTC) Directory

Search for the names and contact information of hemophilia treatment centers and staff that are part of the federally funded HTC network.

National Bleeding Disorders Foundation Regional Chapter Directory

Find your local NBDF chapter for resources near you.

Believe Limited: The Science Fair

The Science Fair provides hands-on learning for the entire family, connecting you to the science of bleeding disorders through larger-than-life, visual, and tactile experiences.

Gene therapy research and genetics information

American Society of Gene & Cell Therapy

Get more information about gene and cell therapy, including Gene Therapy 101, disease treatments, and clinical trials.

FDA: What Is Gene Therapy?

Learn more about genes and cells and how they interact, as well as how gene therapy works and the safety and effectiveness of gene therapy.

FDA: What Is Gene Therapy? (Spanish)

Learn more about genes and cells and how they interact, as well as how gene therapy works and the safety and effectiveness of gene therapy.

Genes in Life

Genes in Life is a place to learn about all the ways genetics is a part of your life, including how genetics affects the family, talking with your healthcare providers or professionals about genetics, and getting involved in research.

Medline Plus: Genetics

Dive in deeper to learn more about genetic conditions, genes, chromosomes, and DNA.

NIH Genetic and Rare Diseases Information Center

Learn more about all types of hemophilia, including a disease overview, symptoms, causes, diagnosis, advocacy and support groups, research, and more.

NIH National Human Genome Research Institute

Watch videos to learn more about gene therapy and how it aims to treat genetic conditions in a direct way.

Additional resources

Caregiver Action Network

Find support and resources for family caregivers of loved ones with a rare disease.

ClinicalTrials.gov

Search for and review all possible clinical trials. There are over 450,000 research studies in all 50 states and in over 200 countries to explore.

EURORDIS

EURORDIS is a nonprofit organization that empowers, partners with, and advocates for people living with a rare disease in Europe.

EveryLife Foundation

The EveryLife Foundation for Rare Diseases is a nonprofit, nonpartisan organization dedicated to empowering the rare-disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.

Global Genes

Global Genes is committed to eliminating the challenges of rare disease. Find information, resources, and connections to all communities affected by rare diseases. Learn about their global advocacy alliance, sponsorship opportunities, commitment to health equity, and more.

National Organization for Rare Disorders

NORD has been helping to advance research and drive policy for over 40 years. They provide patient assistance programs, a rare-disease database, centers of excellence, and the IAMRARE® Program.

National Society of Genetic Counselors

Get access to a directory of over 3,300 genetic counselors in the US to help navigate through genetic conditions.

Stay connected

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