Click an option on the listing key to reorganize search results.
Find A Cure Transit Hemophilia Resources:
P
Accredo is creating better models of care for patients with chronic and complex conditions through our unique Therapeutic Resource Centers. We understand that managing a chronic condition requires personal attention from caring, knowledgeable professionals. Our patient care teams are staffed by pharmacists, registered nurses, pharmacy technicians, patient care representatives, and reimbursement specialists—each with therapy-specific training for a focused level of service.
P
S
ADVATE [Antihemophilic Factor (Recombinant), Plasma/Albumin-Free Method] is a medicine used to replace clotting factor VIII that is missing in people with hemophilia A. ADVATE is used to prevent and control bleeding in people with hemophilia A. Your doctor may give you ADVATE when you have surgery.
ADVATE is not used to treat von Willebrand's Disease.
R
All About Bleeding is an informative resource for the von Willebrand disease community brought to you by CSL Behring, a company with a long combined history of creating a stable supply of life-saving therapies.
P
AMEDS.com is dedicated to empowering customers by offering the largest selection of home healthcare products available anywhere or from any source.
C
D
Through the eyes of survivors and family members, BAD BLOOD chronicles how a “miracle” treatment for hemophilia became an agent of death for 10,000 Americans
Bleeding Disorders Foundation of Washington
> websiteC
L
N
The Bleeding Disorder Foundation of Washington is a volunteer-based non-profit that works to improve the quality of life of individuals and families affected by bleeding disorders by providing caring support , quality education and targeted advocacy aimed at enhancing medical care and insurance coverage for our community.
R
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.
B
I
Blood 4 is a blog written by a psychologist working at Hospital das Clínicas at the Ambulatory of Hemophilia in São Paulo, Brazil.
Bloodindex seeks to deliver quality blood care and health care information to the whole world, and is world's first vortal on blood care.
book: Honest Medicine by Julia Schopick
> websiteBK
HONEST MEDICINE introduces four lifesaving treatments that have been effectively treating--and in some cases curing--people for 25-90 years.
book: Survivor - One Man's Battle with HIV, Hemophilia, and Hepatitis C
> websiteBK
On January 3, 1987, teenager Vaughn Ripley receives what seems to be a death sentence. A lifelong hemophiliac, he has been infused with tainted blood and is found to be HIV+. In this memoir, Ripley not only recounts his life living with severe physical ailments, but also details his fight to live.
BK
Book: Your Medical Mind by Dr. Jerome Groopman that focuses on patient decision making
B
Bringing Generations Together is a blog all about Hemophilia, with regular postings about the latest issues and discoveries.
I
N
The Canadian Hemophilia Society strives to improve the health and quality of life for all people with inherited bleeding disorders and to find a cure.
C
P
Caring Voice Coalition seeks to empower our patients to meet these challenges through comprehensive, effective programs and a knowledgeable, caring staff. We value our reputation as a responsible, responsive organization with a unique, holistic approach to improving the lives of our patients.
B
C
Causes of Hemophilia aims to empower consumers through providing information that may help in the development of informed decisions
Cells That Heal Us From Cradle To Grave: A Quantum Leap in Medical Science
> websiteBK
book on stem cell research
K
N
The Center for Courageous Kids of Scottsville, Kentucky is a free medical camping facility designed specifically for children suffering from illnesses such as cancer, heart disease, kidney disease, epilepsy, spina bifida, diabetes, severe asthma, hemophilia, HIV, and juvenile arthritis.
CHOIR Stars for the Creative and Performing Arts
> websiteK
N
C.H.O.I.R. Stars for the Creative and Performing Arts® is a non-profit organization committed to providing hope and inspiration through the creative and performing arts to teens and young adults with a variety of health conditions. Our organization holds weekend arts workshops throughout the year for teens and young adults with chronic health conditions and their siblings, and offers additional programming such as our multiple free family arts outings a year. In addition, we provide arts outreach to youth in hospitals, and provide awareness for the health conditions our C.H.O.I.R. families are facing.
N
The Coalition for Hemophilia B seeks to provide information about treatment options to patients and their families, as well as instigate and fund research and product development that will improve quality of life for those living with Hemophilia, and ultimately eliminate the disease.
F
The Committee of Ten Thousand represents people with hemophilia who were given HIV through commercially-produced, federally approved blood products during the 1980's.
N
Coping.org provides tools for coping with Hemophilia and other bleeding disorders.
C
P
At CuraScript, we are dedicated to the delivery of extraordinary care, one patient at a time. Providing affordable, high quality care for complex chronic conditions requires cooperation among many healthcare experts. CuraScript offers a broad range of services for physicians, health plan sponsors, and pharmaceutical manufacturers to support the delivery of that care.
N
R
CuresNow is fighting for the lives of millions of Americans through a campaign of mass education in ethical scientific research in the advancement of regenerative medicine, the most promising technology to date for unlocking a cure for some of the most debilitating diseases.
C
K
N
R
A resource for disabling conditions that can be considered severe enough by the Social Security Administration (SSA) to qualify a person for Social Security disability benefits.
These conditions can interfere with an individual’s ability to achieve gainful employment, thereby making that person eligible for SSDI or SSI benefits.
P
DrugWatch.com is a comprehensive Web site database featuring extensive information about thousands of different medications and drugs currently on the market or previously available worldwide.
D
Documentary on hemophilia
F
K
N
The Family Resource Network is a comprehensive family-focused human service organization serving a broad spectrum of disabilities.
L
N
FAMOHIO is a non-profit organization that provides emotional and educational support to individuals with hemophilia and related bleeding disorders.
Fear Not [book on surviving kidney cancer]
> websiteP
This father and son team up to tell a story of faith and healing. This devotional styled book also offers personal, practical, and biblical insights that sustained these men during a struggle for health and faith. "God had a purpose for keeping me here."
C
K
R
Find A Cure Panel is a market research service created specifically to impanel people with long term ailments such as Parkinson's, epilepsy, HIV/AIDS, cancer, etc. and their caregivers. If you would like to know more about how you can help find a cure, please contact us.
B
Girl Bleeder is a blog written by a Special Education Teacher with hemophilia.
L
N
The Great Lakes Hemophilia Foundation is dedicated to advancing the quality of life of individuals and families affected by hemophilia or other blood disorders by ensuring a broad range of services and programs while supporting research to improve care and to find a cure.
P
S
Grifols has been working in the fields of transfusion, blood banking and clinical analysis for more than 70 years. Founded in 1940 by Dr. J.A. Grifols Roig, three generations of the Grifols family have led the company ever since. Our Grifols S.A. President, Victor Grifols, ensures that our company will always remain focused on what matters most - people. This dedication to the progress of healthcare for humankind has led to the distribution of Grifols products worldwide.
I
K
N
The Haemophilia Society works in close partnership with the United Kingdom's National Health Service to provide information and support for all people affected by bleeding disorders.
Site for doctors administering to hemophilia patients
N
The Hemophilia Federation of America is a national nonprofit organization that assists and advocates for the bleeding disorders community.
L
N
The Hemophilia Foundation of Illinois exists to improve the quality of life for persons affected by inherited bleeding disorders.
C
L
N
Founded in the 1950's, The Hemophilia Foundation of Maryland is the only non-profit 501 (c)(3) organization in the state of Maryland which is devoted to improving the quality of life for persons affected with bleeding disorders and their complications. The bleeding disorder community includes people with Hemophilia A, Hemophilia B and von Willebrand disease.
Hemophilia Foundation of Southern California
> websiteL
N
Hemophilia Foundation of Southern California seeks to promote, supervise and administer the programs for the welfare of people with hemophilia, related bleeding disorders, and their families, through proper medical care, treatment, education and research.
B
Hemophilia Mom is written by a mom in Missouri whose son has hemophilia.
B
Hemophilia Moms offers personal stories written by moms across the country, informative articles on hemophilia and tips on living well, and dates and locations of upcoming conventions.
F
Hemophilia of Georgia exists so that people in Georgia affected with bleeding disorders live as normally and productively as possible
F
Hemophilia of North Carolina is a non-profit organization whose goal is to assist, involve and educate persons affected by bleeding disorders and to educate the medical community and the public about bleeding disorders.
C
K
L
N
The Hemophilia Outreach of El Paso is a non profit 501(c)3 organization, established by volunteers, who are individuals or parents of children with Hemophilia and/or von-Willebrand. Our objective is to give all necessary educational information and emotional support to individuals and families that have a bleeding disorder.
Hemophilia Village supports the hemophilia community, including people with hemophilia A or hemophilia B and the people who care for them.
K
V
Kelly Champagne discusses her son's hemophilia.
P
One stop shop for hemophilia products and services that include insurance processing. Their offerings include:
# We stock all Blood Clotting Products and Supplies.
# 24 hour 365 days a year delivery services.
# Nationwide Network of Pharmacies to serve you.
# We work closely with your Doctor and/or Treatment Center’s care plan to maintain optimal health.
# “Factor Protection Program” insures potency protection from manufacturer to your doorstep
P
S
Humate-P is the most prescribed von Willebrand factor/factor VIII (VWF/FVIII) concentrate treatment1,2:
N
P
R
Joey's Song is a series of CD's that brings together national and international artists to raise money for epilepsy research and advocacy, in honor of Joey Gomoll. Joey was just shy of 5 years old when he passed away in March 2010. In the months since then his father, and a passionate group of musicians, friends and supporters, have pulled together a collection of rare and unreleased music, as well as special recordings and children's songs. Joey's Song: Volume One and Joey's Song for Kids: Volume 1 were released January 25, 2011! Get your copies today!
N
The Kentucky Hemophilia Foundation seeks to enhance the lives of those affected by hemophilia and other bleeding disorders.
K
KidsHealth provides information about hemophilia, the rare bleeding disorder which prevents the blood from clotting properly.
C
I
K
P
LA Kelley Communications offers free groundbreaking books and newsletters with the single goal of helping families master your world of bleeding disorders.
B
H
R
Resources to support spiritual well-being for those with chronic illness. Scholarly articles on the inter-relationship between spirituality and medicine. My personal struggles living with an incurable metastatic cancer.
B
Reid Coleman's blog about hemophilia.
C
L
N
The Lone Star Chapter of the National Hemophilia Foundation serves the bleeding disorders community of South Texas. We are based in Houston and our area includes McAllen, Corpus Christi, San Antonio, Austin, and El Paso
C
K
P
Matrix Health is a specialized pharmacy dedicated, determined, and committed to providing outstanding comprehensive services to those with hemophilia, von Willebrand, and other bleeding disorders.
C
F
hemophilia social community
C
F
My Blood Brothers is a social networking site for people affected by Hemophilia, and their families, friends, and loved-ones.
N
The National Hemophilia Foundation is dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research.
National Organization for Rare Diseases (NORD)
> websiteN
R
NORD’s vision and guiding principles on which our advocacy initiatives are based:
A national awareness and recognition of the challenges faced by people living with rare diseases and the associated costs to society.
A nation where people with rare diseases can secure access to diagnostics and therapies that extend and improve their lives.
A social, political, and financial culture of innovation that supports both the basic and translational research necessary to create diagnostic tests and therapies for all rare disorders.
A regulatory environment that encourages development and timely approval of safe and effective diagnostics and treatments for patients with rare diseases.
N
The New England Hemophilia Association is dedicated to improving the quality of life for persons with bleeding disorders and their families through education, support, and advocacy.
C
L
N
The New York City Hemophilia Chapter (NYCHC) is a non-profit 501(c)3 organization incorporated in 2008 to address the needs of the bleeding disorder community in the greater NYC area, including: Long Island, Staten Island, Westchester, Queens and Brooklyn.
P
S
NovoSeven® RT (Coagulation Factor VIIa [Recombinant] Room Temperature Stable) is indicated for the treatment of bleeding episodes in hemophilia A or B patients with inhibitors to FVIII or FIX and in patients with acquired hemophilia; prevention of bleeding in surgical interventions or invasive procedures in hemophilia A or B patients with inhibitors to FVIII or FIX and in patients with acquired hemophilia; treatment of bleeding episodes in patients with congenital Factor VII deficiency and prevention of bleeding in surgical interventions or invasive procedures in patients with congenital FVII deficiency.
B
I’m a 57 year old survivor. I have severe factor 9 hemophilia, HIV, hep c, and have survived cancer twice. I have 6 joint replacements, one elbow twice. Septic arthritis 3 times, and 6 kidney stones. I’ve had almost every treatment for hemophilia; starting with direct transfusions, through peanut flour, and gene therapy. I started this blog to share my experiences about these things, but everyone knows something that I don't. I look forward to learning from you.
Partnership for Prescription Assistance
> websiteP
T
Site that help people who are uninsured get treatment.
Their services are free.
N
Patient Services, Inc. (PSI) is the "ground breaking" 501(c)(3) non-profit, charitable organization of its kind. Two decades ago, we recognized the importance of providing a “safety net” for patients with chronic illnesses who were struggling to keep up with expensive premiums and co-payments. Since 1989 we have led the charge to provide much needed patient assistance, soliciting donations to fund thousands of patients and their families in a myriad of disease areas.
P
S
Your community: Learn how people like you are living with hemophilia and find out where to go for answers and support. Sponsored by Pfizer.
N
The Reach for the Stars Foundation is dedicated to providing individuals afflicted with Cystic Fibrosis and their families with the resources, knowledge and support necessary to manage their unrelenting battle with this insidious disease. Cystic Fibrosis is not only physically debilitating, but carries a heavy financial and psychological burden for families.
B
Red Bleed is a blog written by the father of a son with severe hemophilia A.
C
N
Caring for Caregivers
P
RockScar Love is inspiring passionate lives through clothing. We celebrate sexy scars, the lessons they teach us and the strength they create.
N
Save One Life, Inc. is a sponsorship program dedicated to improving the lives of children and young adults with hemophilia and other bleeding disorders in the developing world.
K
N
SNUGHUGS.ORG is a not for profit charitable organization that delivers fleece tied blankets to children in hospitals that are fighting life threatening illnesses.
I
N
The Swedish Hemophilia Society aims to inform the general public, the community and government institutions about the hemophilia disease and its consequences, as well as aid the hemophiliacs in their lives.
Tennessee Hemophilia and Bleeding Disorders Foundation
> websiteC
L
N
The Tennessee Hemophilia and Bleeding Disorder Foundation’s mission is to Enhance the Lives of Those Affected by Bleeding Disorders.
N
The Utah Hemophilia Foundation seeks to empower individuals and families affected by hemophilia to lead healthier and more self-sufficient lives.
P
VidaCura is an online store where you can learn about home healthcare and wellness products, compare models and prices, and talk about what works and what doesn’t.
C
K
L
Amy Maeder is a mother of two teenagers with severe hemophilia. Amy is very passionate about improving the lives of her sons and the bleeding disorders community. Amy, along with HFA encourages you to TAKE ACTION! Call or write your person in congress TODAY!
I
N
Through its various healthcare development programs and publications the World Federation of Hemophilia works to introduce, improve, and maintain care for people with hemophilia and related disorders around the world.
Find A Cure Transit Hemophilia Resources:
Click an option on the listing key to reorganize search results.