Other Resources and Helpful Links
There are several related organizations as well as support and advocacy groups that provide valuable information and services relating to Factor V Leiden.
Many of these organizations publish both easy to understand as well as in-depth articles and brochures about Factor V Leiden and some are the driving force behind the latest research and treatment of the disorder. Many organizations also have experts who serve as medical advisors or can provide a list of doctors and clinics that specialize in venous thrombosis.
Visit the organization’s website or contact them to learn about the services they offer.
Please note: Inclusion on this list is not an endorsement by the American Factor V Leiden Association, Inc..
Do you know of an organization associated with Factor V Leiden not listed here?
We want to hear from you.
Learn more about Factor V Leiden
These resources provide more information about Factor V Leiden.
- The American Heart Association has published an article for patients on Factor V Leiden.
- Genetics Home Reference (GHR) contains information on Factor V Leiden thrombophilia. This website is maintained by the National Library of Medicine.
- The National Human Genome Research Institute’s (NHGRI) website has an information page on this topic. NHGRI is part of the National Institutes of Health and supports research on the structure and function of the human genome and its role in health and disease.
These in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
- GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions.
- Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
- Online Mendelian Inheritance in Man (OMIM) is a catalog of human genes and genetic disorders. Each entry has a summary of related medical articles. It is meant for health care professionals and researchers. OMIM is maintained by Johns Hopkins University School of Medicine.
- PubMed is a searchable database of medical literature and lists journal articles that discuss Factor V Leiden thrombophilia. Click on the link to view a sample search on this topic.
More resources about Factor V Leiden at these links below:
- Factor V Leiden Information for Patients and Families: (2007) Explains what Factor V Leiden is and how it affects clotting, how it is diagnosed, and how you get Factor V Leiden. It also gives tips to avoid blood clots, risks you can’t avoid, how you know when you get a blood clot, and how you can pass Factor V Leiden on to your children. From Hamilton Health Sciences/McMaster Children’s Hospital.
- Factor V Leiden Thrombophilia: (August 2010) Explains what Factor V Leiden is, how common it is, the genetic changes it causes, how it is inherited, resources for managing FVL, and information about genetic testing for it. From the National Institutes of Health, National Library of Medicine, Genetic Home Reference.
- Learning About Factor V Leiden Thrombophilia: (2011) Explains what FVL is, including its symptoms, how it is diagnosed and treated, and what is known about the heredity of FVL. From the The National Human Genome Research Institute of the National Institutes of Health.
- Factor V Leiden Thrombophilia: (2010) Discusses the characteristics of FVL, how it is diagnosed, treated, and managed, risks (including during pregnancy, prevention of complications, and extensive genetic information with genotype/phenotype correlations. GeneReviews™ [Internet] from the National Center for Biological Information of the National Library of Medicine of the National Institutes of Health.
- Factor V Leiden Storybook for Children by John Puetz, MD. A children’s book about Factor V Leiden. This is a downloadable pdf file of a storybook on Factor V Leiden for children.
- What is Factor V Leiden? from “100 questions and answers about DVT and PE”
- HealthMonitor Guide to living with DVT/PE “Guide to living with DVT/PE”.
- https://www.childrensmn.org/services/care-specialties-departments/cancer-blood-disorders/conditions-and-services/blood-disorders-services/bleeding-clotting/factor-v-leiden/ , “What is Factor V Leiden?”, Children’s Minnesota.
- World Thrombosis Day An annual event recognized each year on October 13.
Professional and Related Organizations / Advocacy Groups
Washington, DC 20036
Toll Free 866-828-1231
- National Blood Clot Alliance
- 8321 Old Courthouse Road
- Suite 255
- Vienna, VA 22182
- Toll-free: 1-877-466-2568 (877-4NO-CLOT)
- Telephone: +1-703-935-8845
- E-mail: firstname.lastname@example.org
- Website: https://www.stoptheclot.org/
The National Blood Clot Alliance’s (NBCA) founding members were patients and medical professionals attending a thrombosis and thrombophilia workshop hosted by The Centers for Disease Control and Prevention in 2003. Sharing a common concern, they resolved to build a national organization to advocate for – and to educate and support — those affected by clotting disorders. Each Board member at that time, and most still today, have been touched personally by blood clots, DVTs, pulmonary embolism or such genetic variants as the Factor V Leiden gene mutation.
The NBCA is a 501(c)(3), non-profit, voluntary health organization dedicated to advancing the prevention, early diagnosis and successful treatment of life-threatening blood clots such as deep vein thrombosis, pulmonary embolism, and clot-provoked stroke.
NBCA works on behalf of people who may be susceptible to blood clots, including, but not limited to, people with clotting disorders, atrial fibrillation, cancer, traumatic injury, and risks related to surgery, lengthy immobility, child birth and birth control.
NBCA accomplishes its mission through programs that build public awareness, educate patients and healthcare professionals, and promote supportive public and private sector policy.
The mission of Blood Clot Recovery Network is to provide a community where blood clot patients, and their families and friends, can join together to find information and support to help aid in recovery from the often life-changing impact of blood clots, including deep vein thrombosis (DVT) and pulmonary embolism (PE).
Blood Clot Recovery Network is here to remind you that there is hope for healing from blood clots, and you are not alone.
- PO Box 66
- Zionsville, IN 46077
The American Blood Clot Association is a nationwide non-profit, voluntary health organization that is dedicated to educating patients and healthcare professionals to prevent, diagnose, and treat life-threatening blood clots like DVT (deep vein thrombosis), PE (pulmonary embolism), and clot related stroke.
The American Blood Clot Association envisions a future in which there is a high public awareness to the life threatening dangers of blood clots. With a higher awareness, blood clot related conditions and deaths will be significantly reduced.
The American Blood Clot Association focuses its initiatives on the people who are at a high risk of developing a blood clot, those who have experienced a blood clot, and medical professionals who diagnose and treat patients.
* Become the key source of information to increase awareness and knowledge of blood clot conditions and treatments to patients and healthcare professionals.
* Prevent blood clots(thrombosis), diminish suffering, and reduce death related to blood clots.
* Work with healthcare professionals to establish guidelines to prevent, diagnose, treat, and manage blood clots.
* Assist in developing support groups locally and online.
* Promote educational courses/webinars for patients and healthcare professionals
* Build an online social network that increases awareness, encourages conversation and collaboration.
* Create awareness through traditional and social media channels
* Encourage medical professionals to specialize in thrombosis/thrombophilia.
Choices connected to family planning, pregnancy, and the treatment of menopause symptoms must be carefully weighed to reduce the risk of dangerous blood clots.
- c/o JWC Covenant, Inc.
- PO Box 13299
- The Woodlands, TX 77393
The Society of Hematologic Oncology (SOHO) was established as a non-profit corporation in 2012 with aims to promote worldwide research, education, prevention, clinical studies and optimal patient care in all aspects of hematologic malignancies and related disorders. Since that time, nearly 4,000 members have joined the society from around the globe.
SOHO is an international society designed specifically for clinicians, research scientists and related health care professionals who specialize in the research and treatment of patients with hematologic malignancies. SOHO’s mission is to expedite worldwide research and education through the exchange of scientific information. Organized by its founders and world class committees, SOHO is the only international society specific to this field.
- American Society of Pediatric Hematology/Oncology
- 8735 West Higgins Road, Suite 300
- Chicago, IL 60631
- Fax: 847.375.6483
- E-mail: email@example.com
Founded in 1981, the American Society of Pediatric Hematology/Oncology (ASPHO) currently has 2,000 members. ASPHO offers a forum for the exchange of ideas on issues of special interests and concern to people in the specialty, as well as a means for facilitating communication among members. ASPHO is the only professional organization dedicated solely to the professional development and interest of subspecialists in pediatric hematology/oncology.
The Society works to actively advance programs and initiatives in professional education, scientific and clinical research, training, and practice issues. ASPHO represents pediatric hematologists/oncologists through active liaisons with numerous professional societies and alliances. Both ASPHO’s conference and its journal, Pediatric Blood & Cancer, provide forums for presenting research to colleagues and peers. ASPHO welcomes members’ involvement in volunteer activities such as standing committees, task forces, and contributions through member publications and other activities. You have the opportunity to make a difference in the profession through your personal involvement as an ASPHO member.
ASPHO is a multidisciplinary organization dedicated to promoting the optimal care of children, adolescents and young adults with blood disorders and cancer by advancing research, education, treatment, and professional practice.
European Hematology Association
EHA Executive Office
Koninginnegracht 12b, 2514 AA;
The Hague, The Netherlands
What we do:
- Organize an annual congress attended by more than 12,000 hematologists from all over the world.
- Provide an educational program based on the European Hematology Curriculum.
- Equip hematologists with knowledge on par with European standards through the EHA Campus.
- Encourage professional development among hematologists at every stage of their careers.
- Publish “HemaSphere”, our open access journal.
- Strengthen hematology’s voice in Europe through lobbying.
International Society of Hematology (ISH)
David Gomez Almaguer, M.D.
Chair- of – Council
Head of Hematology
Universidad Autonoma de Nuevo Leon,
Hematology Service, Hospital Universitario
ISH is the oldest and only world hematology organization established by the national hematology societies, in 1946. ISH is an independent organization dedicated to education of professionals and public in all areas of hematology. The Society is also concerned with advancing scientific research as well as the practice of hematology at both clinical and laboratory levels. The Society always has the strongest commitment to serve, educate and keep up-to-date knowledge in hematology as well as to promote highest ethical and scientific standards.
ISH membership is open to any person with medical or scientific qualification of good professional standing with active interest in hematology for a period of at least 5 years. ISH has over 4.500 active members, worldwide.
Aims and Objectives
- To provide an international educational source and forum for hematology by contributing to the creation of an academic, scientific and research network in hematology to :
- improve the technology of hematological diagnosis and clinical practice in different hematological subspecialities,
- strengthen the communications between academic and research institutions,
- increase of exchange between research groups and industry
- promote training in hematological technology and contribute to education and practice of hematology in developing countries
- To encourage collaboration in scientific basic and clinical hematological research
- To promote the advancement of hematology and its recognition as a branch of the bio-medical sciences.
- To standardize hematological methods and nomenclature on an international scale.
- To facilitate faster and better understanding of the basic scientific principles of hematology among hematologists, basic science investigators, practitioners, laboratory hematologists and general practitioners.
- 368 Boylston Street
- Brookline, MA 02445
The North American Thrombosis Forum (NATF) is a nonprofit organization dedicated to improving the lives of those affected by blood clots and related diseases. Through our comprehensive resources and innovative programming, we strive to educate patients and healthcare providers about thrombosis and its complications.
The North American Thrombosis Forum (NATF) is a 501(c)3 nonprofit organization incorporated by the Commonwealth of Massachusetts. NATF is dedicated to improving the lives of those affected by blood clots and related diseases. Through our comprehensive resources and innovative programming, we strive to educate patients and healthcare providers about thrombosis and its complications.
NATF’s vision is to improve patient care, outcomes, and public health by utilizing a multi-disciplinary approach to advance thrombosis research and education. NATF’s legacy will be the improvement of patient care, outcomes, and public health by supporting thrombosis-related programs, such as novel research projects, innovative educational programs, public policy initiatives, regulatory issues, and advocacy. NATF also seeks to broaden training opportunities for physicians, scientists, and other health professionals.
- 610 Jones Ferry Rd Ste. 205
Carrboro, NC 27510 USA
- Phone: +1 919 929 3807
Fax: +1 919 929 3935
The International Society on Thrombosis and Haemostasis (ISTH) advances the understanding, prevention, diagnosis and treatment of conditions related to thrombosis and hemostasis.
The Society is dedicated to transformative scientific discoveries and clinical practices, the development of young professionals and the education of physicians, scientists and allied health professionals wherever they may live.
Today, the ISTH is the leading thrombosis- and hemostasis-related professional organization in the world with more than 5,000 members in 100 countries.
7101 Wisconsin Avenue
Bethesda, MD 20814
To reinforce and expand ACMG’s position as the leader and prominent authority in the field of medical genetics and genomics, including clinical research, while educating the medical community on the significant role that genetics and genomics will continue to play in understanding, preventing, treating and curing disease.
ACMG will empower its members to be leaders in the integration of genetics and genomics into all of medicine and healthcare, resulting in improved personal and public health.
To support the professional needs of its members in the era of genomic medicine and to facilitate the delivery of quality clinical and laboratory medical services to patients and their families, the ACMG Board of Directors has approved a strategic plan for the 3-year period of 2019-2022.
Carden Jennings Publishing Co., Ltd.
Medical Multimedia Division
375 Greenbrier Drive, Suite 100
Charlottesville, VA 22901
BloodLine was launched in December of 1995 at the American Society of Hematology Annual Meeting. Initially, it was a reference site containing links to important hematology sites and resources on the Internet. Over the years, the site has gone through many major revisions with the aim of placing more emphasis on the publication of original content and improving the site’s editorial focus and scientific validity.
Bloodline, a publication of Carden Jennings Publishing Co., Ltd., is dedicated to furthering and enhancing the fields of hematology and oncology through the presentation of knowledge in the following manners:
- The publication of original clinical and laboratory research.
- The creation of comprehensive reference works that are continuously useful to clinicians and researchers in the blood sciences.
- The creation and dissemination of educational materials.
- The publication of new and emerging science presented at conferences worldwide.
- The archiving of a comprehensive library of third-party resources of ongoing interest to clinicians and researchers.
- The maintenance of a means for clinicians and researchers to interact.
- The presentation of material in an easy-to-use networked format.
UNC Hemophilia and Thrombosis Center
6340 Quadrangle Drive, Suite 50
Chapel Hill, NC 27517
Clot Connect is a public service of the University of North Carolina at Chapel Hill Blood Research Center connecting patients and health care professionals to reliable, clinically relevant resources on venous thromboembolism (DVT/PE), thrombophilia (clotting disorders), and anticoagulation.
The mission of Clot Connect is to increase knowledge of thrombosis, thrombophilia and anticoagulation by providing connection to education and support resources for patients and health care professionals.
A key role of Clot Connect is to serve as the go-to clearinghouse for reliable, clinically relevant thrombosis and anticoagulation information.
- American College of Obstetricians and Gynecologists
409 12th Street SW
- Washington, DC 20024-2188
Making a Difference in Women’s Health
We’re working to improve and strengthen women’s health care around the world with programs dedicated to global health, social issues, advocacy, and more.
- Genetic and Rare Diseases Information Center (GARD)
- PO Box 8126
- Gaithersburg, MD 20898-8126
- Toll-free: 1-888-205-2311
The Genetic and Rare Diseases Information Center (GARD) is a program of the National Center for Advancing Translational Sciences (NCATS) and is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
- 19260 Stone Oak Parkway, Suite 101
- San Antonio, TX 78258
ClotCare is a charitable 501(c)(3) non-profit organization supported by industry and individual tax-deductible contributions.
ClotCare Online Resource was started in 2000 by Henry I. Bussey, Pharm.D. and his daughter, Marie Bussey. Since then, ClotCare has grown significantly to include an editorial board including 19 experts in the field of anticoagulation and antithrombotic therapy.
ClotCare strives to help others improve lives by providing both patients and healthcare providers with the most up-to-date information and expert insight on optimal use of antithrombotic and anticoagulant therapy. In achieving this end, ClotCare seeks to be the premier source to which patients and clinicians turn to get information on these therapies used to prevent and/or treat unwanted blood clots that cause heart attacks, strokes, and other potentially catastrophic events.
Antiphospholipid Syndrome (APS)
- APS Foundation of America, Inc.
- P. O. Box 801
- LaCrosse, WI 54602-0801
The APS Foundation of America, Inc. is the only United States nonprofit health agency dedicated specifically to bringing national awareness to Antiphospholipid Syndrome (APS), the major cause of multiple miscarriages, thrombosis, and young strokes and heart attacks. We are a volunteer-run, community-based, non-profit organization.
MedlinePlus is a service of the National Library of Medicine (NLM), the world’s largest medical library, which is part of the National Institutes of Health (NIH).
Our mission is to present high-quality, relevant health and wellness information that is trusted, easy to understand, and free of advertising, in both English and Spanish. Anywhere, anytime, on any device—for free.
Understanding Blood Clots – CDC
National Organization for Rare Diseases
- National Headquarters
- 55 Kenosia Avenue
- Danbury, CT 06810
- Phone: 203-744-0100
- Fax: 203-263-9938
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
Thrombophilia Awareness Project
The Thrombophilia Awareness Project is an online resource for individuals and families affected by Factor V Leiden, a hereditary blood coagulation disorder. Factor V Leiden may be associated with blood clots in the veins, blood clots in the lung, and other potentially serious health risks. The web site provides information for affected individuals and families on how to join the mailing list, a description of the Factor V Leiden mutation, and dynamic linkage to additional sources of information on such hereditary blood coagulation disorders.
The Society for Vascular Medicine
One Parkview Plaza
Oakbrook Terrace, IL 60181
SVM: A community of vascular clinicians and scientists
Founded in 1989, the mission of the Society for Vascular Medicine is to promote and advance the discipline of vascular medicine and the care of patients with vascular disease by:
- Establishing standards for post-graduate training and stimulating the formation of vascular medicine training programs.
- Developing educational activities including continuing medical education programs for trainees and health care providers.
- Fostering research in vascular medicine and biology.
- Promoting interdisciplinary clinical excellence in the diagnosis and treatment of vascular disease through the creation of care standards and by engaging in quality improvement activities.
- Serving an advisory role to educational institutions, government agencies, and other health care organizations.
Europe PMC is an open science platform that enables access to a worldwide collection of life science publications and preprints from trusted sources around the globe.
Europe PMC is developed by EMBL-EBI. It is a partner of PubMed Central and a repository of choice for many international science funders.
Free, transparent, and community-driven, Europe PMC is your gateway to life science research.
- 1730 M Street NW, Suite 500
Washington, DC 20036-4561
About the National Health Council
The National Health Council (NHC) is a stakeholder-informed, patient-focused organization that forges consensus among diverse organizations and drives patient-centered health policy.
It is the diversity of our more than 140 members that enables us to create a collaborative environment and put forward consensus public policy solutions that keep the patient central to all we do.
The NHC delivers a wide range of member services, including meetings and conferences, action teams, affinity groups, webinars, and projects to engage with us and network with each other.
The NHLBI is part of the U.S. Department of Health and Human Services’ National Institutes of Health (NIH)—the Nation’s biomedical research agency that makes important scientific discovery to improve health and save lives. We are committed to advancing science and translating discoveries into clinical practice to promote the prevention and treatment of heart, lung, blood, and sleep disorders, including VTE. Learn about current and future NHLBI efforts to improve health through research and scientific discovery.
The Shane Foundation
To contact call us at 310.569.7155.
THE SHANE FOUNDATION was established to raise awareness and support research for the prevention and treatment of contraceptive-and pregnancy-related blood clotting disorders.
Maternal/fetal clotting disorders are responsible for miscarriages, low birth weight, stillbirths and maternal deaths.