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.
Is there help available for families with hemophilia?
Individuals with hemophilia and von Willebrand disease may qualify for assistance for coordination of care and payment for medical costs from the state of California through California Children Services (CCS), for youth under 21, and the Genetically Handicapped Persons Program (GHPP), for adults or individuals under 21 ...
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 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 hemophilia qualify for disability?
Fortunately, hemophilia is included in the Social Security Administration's (SSA) Blue Book of impairment listings, which means it may be possible to obtain benefits if you meet the requirements of the listing. This condition is included in section 7.08 for disorders of thrombosis and hemostasis.
What type of disability is hemophilia?
Hemophilia is usually an inherited bleeding disorder in which the blood does not clot properly. This can lead to spontaneous bleeding as well as bleeding following injuries or surgery.
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).
Does hemophilia have any benefits?
People who have severe hemophilia A may benefit from regular injections of clotting factors as a preventive treatment. This may lower the risk of severe bleeding. Severe hemophilia affects the blood's clotting ability so much that people who have it may start bleeding for no apparent reason.
How much do hemophilia treatments 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.
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)
Does hemophilia get worse with age?
Many of the complications of hemophilia, including intracranial hemorrhage, joint disease, and inhibitor development, increase with increasing age.
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.
Does hemophilia have any benefits?
People who have severe hemophilia A may benefit from regular injections of clotting factors as a preventive treatment. This may lower the risk of severe bleeding. Severe hemophilia affects the blood's clotting ability so much that people who have it may start bleeding for no apparent reason.
How is the family of a person with hemophilia affected?
Hemophilia affects the patient's entire family throughout his lifetime. As the person with hemophilia grows and develops, family circumstances also change over time. Family challenges can negatively impact the ability of the patient and his family to participate in hemophilia care or adhere to a plan of treatment.
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).
What famous family had hemophilia?
Richard Burton. The love of Elizabeth Taylor's life and a Shakespearean actor for the ages, Richard Burton starred in 61 films and 30 plays — and was the first Hollywood star to reveal he had hemophilia. In fact, Burton and Taylor set up the Richard Burton Hemophilia Fund in 1964 to help find a cure for hemophilia.
Our work in this area
We want to promote coordinated, comprehensive, multi-disciplinary services and care.
RHNs are a 340B covered entity
RHNs are frequently part of the 340B Drug Pricing Program. Awardees and their subrecipients earn program income on hemophilia factor drug sales. HRSA has twenty-two 340B covered entities.
Our hemophilia work in broader context
We oversee–in collaboration with the National Heart, Lung, and Blood Institute – the Healthy People 2030 Blood Disorders Dashboard.
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 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 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.
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 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 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 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 hemophilia outreach?
The Hemophilia Outreach Center welcomes every opportunity to educate other healthcare professionals about bleeding disorders and the experiences they may face when caring for a patient with a diagnosis or bleeding symptoms.
What is a mentor program?
The Mentoring program provides a safe environment for young individuals (Ages 6+) with bleeding disorders to utilize peers within the community as role models.
What is an educational conference?
Educational conferences are full of interesting sessions and networking activities for all members of the bleeding disorders community. Everyone is able to find something that sparks their interest. Individuals and families can find sessions on nearly every aspect of living with a bleeding disorder, from basics of a diagnosis to the latest treatment options.
Why is it important for the HOC to be involved in advocacy?
It is important that the members of the bleeding disorders community be involved in advocacy initiatives because nobody can capture the unique circumstances of a patient's story better than the patient themselves.
What age can you self infuse hemophilia?
This is an educational program for individuals with a bleeding disorder between ages 7-22. It’s an opportunity to educate patients and families about how to self-infuse. This program will also give patients and families the opportunity to practice their infusion skills with a hemophilia treatment center nurse present.
What is the goal of a camp?
The goal of Camp is to enrich the lives of individuals with a bleeding disorder, ages 7-15, through inclusion, empowerment, and the development of knowledge and life skills that lead to living independently.
What is a screen reader?
A screen-reader is software that is installed on the blind user’s computer and smartphone, and websites should ensure compatibility with it.
