What organizations help with hemophilia?
The National Hemophilia Foundation (NHF) is dedicated to finding better treatments and cures for bleeding and clotting disorders through education, advocacy, and research. The Hemophilia Federation of America (HFA) is a national nonprofit organization that assists and advocates for the bleeding disorders community.
How can I help someone with hemophilia?
Below are just some of the best ways you can help support a loved one with hemophilia A.Encourage safe activities. ... Have ice packs and bandages handy. ... Lend a hand (literally!) ... Help administer medications. ... Be a chauffeur. ... Stay informed.
Does insurance cover hemophilia treatment?
The majority of people with hemophilia are covered under a commercial plan or a public plan like Medicare or Medicaid.
How many hemophilia treatment centers are there in the US?
Hemophilia Treatment Centers (HTCs) Today, there are about 141 federally funded treatment centers and programs across the country.
What is the average life expectancy of a person with hemophilia?
Estimated median life expectancy of patients with hemophilia was 77 years, 6 years lower than the median life expectancy of the general Dutch male population (83 years).
Can you live a full life with hemophilia?
People with hemophilia can't live normal lives. With proper treatment, most people with hemophilia lead long, full, and productive lives.
How much does hemophilia treatment cost?
The cost of drug therapy for a person with hemophilia can be several hundred thousand dollars per year and annual treatment costs of $1 million or more are not unheard of for patients with the most severe forms of the disease.
How do you stop bleeding from hemophilia?
Apply pressure to the bleeding area. Use an ice pop or piece of ice on the area. When the bleeding stops, help your child avoid hard or hot foods because they can restart the bleeding. If the bleeding does not stop within 20 minutes, call your care team.
What causes hemophilia type A?
Hemophilia A is the result of the body not making enough factor VIII. Hemophilia A is caused by an inherited X-linked recessive trait, with the defective gene located on the X chromosome. Females have two copies of the X chromosome.
What are the types of haemophilia?
The following two are the most common:Hemophilia A (Classic Hemophilia) This type is caused by a lack or decrease of clotting factor VIII.Hemophilia B (Christmas Disease) This type is caused by a lack or decrease of clotting factor IX.
What foods to avoid if you have hemophilia?
In addition, limit your intake of the following:large glasses of juice.soft drinks, energy drinks, and sweetened tea.heavy gravies and sauces.butter, shortening, or lard.full-fat dairy products.candy.foods containing trans fats, including fried. foods and baked goods (pastries, pizza, pie, cookies, and crackers)
How does hemophilia affect a person's life?
Hemophilia can result in: Bleeding within joints that can lead to chronic joint disease and pain. Bleeding in the head and sometimes in the brain which can cause long term problems, such as seizures and paralysis. Death can occur if the bleeding cannot be stopped or if it occurs in a vital organ such as the brain.
How do you stop hemophilia bleeding?
To avoid excessive bleeding and protect your joints:Exercise regularly. ... Avoid certain pain medications. ... Avoid blood-thinning medications. ... Practice good dental hygiene. ... Get vaccinations. ... Protect your child from injuries that could cause bleeding.
Why can hemophilia be cured?
In a small number of people with hemophilia who have had liver transplants, their hemophilia has been cured. This is because clotting factor is made in the liver. The new livers they received made normal amounts of factor for them. Transplants are too risky to use as a cure for hemophilia.
What is the Hemophilia Federation of America?
Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
What is the Financial Resilience Center?
Financial Resilience Center from the National Disability Institute offers tips for money management during the COVID-19 pandemic plus information about stimulus funds, employment, unemployment, public benefits, money management, housing, food, and more. Users can get free financial counseling or coaching.
What is the HFA resource hub?
HFA’s Coronavirus (COVID-19) Resource Hub has a Financial Assistance section specific to coronavirus impact. The Hub also contains resources on health, product availability concerns, mental wellness, and more.
About the Disease
Hemophilia is a disorder in which the blood doesn’t clot normally. It is a rare disease that affects the circulatory system. Subtypes include hemophilia A, hemophilia B and hemophilia C.
Patients can receive free education and support services
The National Hemophilia Foundation conducts research, provides education, and engages in advocacy work surrounding inheritable blood disorders.
What is Genentech Access to Care Foundation?from drugs.com
The Genentech Access to Care Foundation is now the Genentech Patient Foundation. Eligibility determined on a case-by-case basis. Call for most recent medications as the list is subject to change.
What is ribavirin used for?from gene.com
used with a hepatitis C medicine called ribavirin to treat adults and children 5 years and older with chronic hepatitis C and certain types of liver problems
Can you take ribavirin with hepatitis C?from gene.com
not recommended to be used alone or with a hepatitis C medicine called ribavirin without additional hepatitis C medicine s if you have taken an alpha interferon
What is direct patient assistance?
The Direct Patient Assistance program helps to support people in financial crisis caused by a bleeding disorder. When families are in a prolonged crisis due to bleeds or other injuries, their financial concerns present an added level of emotional stress. Our goal is to support families during these difficult times by paying for utilities, food, housing, clothing, communication, medical expenses, transportation, and medical equipment. We can fund a maximum of $1,000. Contact us at [email protected]
What is the purpose of the Benevolence Program?
The Benevolence Program allows us to fund the immediate crisis needs of patients in small amounts. This program is designed to meet a one time or short-term urgent need that cannot be accommodated by the Direct Patient Assistance Program.
What is access to care?
The Access to Care program pays insurance premiums on behalf of patients with a chronic illness who cannot afford insurance or who have lost or will lose their health insurance coverage. Hope Charities recognizes that having medical insurance is a critical component for effective treatment and management of bleeding disorders. We know firsthand the stress endured by families who have lost or are faced with losing their insurance coverage. Our goal is to help patients in crisis maintain medical insurance and have continuous access to appropriate medical treatment and medication.
What is hemophilia assistance?
The Hemophilia Assistance Program helps Texans with hemophilia cover their medical bills. Assistance is provided with blood factor replacement products or reimbursement for health insurance premium payment.
Is a hemophilia patient incarcerated?
Has a diagnosis of hemophilia from a licensed physician. Isn’t incarcerated or a ward of the state. Isn’t eligible for the Children with Special Health Care Needs Services Program, Medicaid or Medicare.
