Meetings & Events

CHOICE Study illustrates that Person with Inhibitors (PWI) have a more bleeding and joint issues

Improvement is needed in treatment and disease management for this population

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Study shows there no difference between patients and siblings on social and emotional functioning, but decreased school-related function in patients with bleeding disorders

Findings demonstrate resiliency and identify specific areas of difficulty related to school and social functioning among youth with bleeding disorders.

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Assessment of Health Literacy & Numeracy in Adolescences with Hemophilia A & B may indicate the need for formal testing

Pilot study findings could impact how HTCs should educate patients on disease interventions

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Sexual Health in Patients with Hemophilia; The Insights from the Patient Reported Outcomes, Burdens and Experiences (PROBE) Study

Older age, joint bleeding and joint status are related to poor sexual health in persons with Hemophilia

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Burden of Comorbid Diseases in Patients with Hemophilia:

Survey shows that persons with hemophilia more frequently report hypertension and gingivitis

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Understanding Treatment and Care Utilization & Perceptions of Females with Hemophilia A or B in the CHOICE Project

Survey shows Females with Hemophilia (FWH) aged 18-34 years have lowest satifaction with their hemophilia care

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Mortality Trends and Causes of Death in Persons with Hemophilia in the United States, 1999-2014

Hemophilia related death rate significantly decreased over time and highlights the need for monitoring trends in morbidities related to aging

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The Relationship of Joint Range of Motion to Factor Activity in Patients with Hemophilia without Prophylaxis: A Longitudinal Assessment of the CDC-UDC Dataset

Factor activity levels have far greater effect on ROM loss than any other patient characteristic

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Bleeding Events and Obstetric Complications of Pregnancy in Hospitalized Patients with Hemophilia: Results from Nationwide Inpatient Sample Database 2003-2011

Study examines Bleeding and Obstetric Complications of Pregnancy in Hospitalized Women with Congenital Hemophilia

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Do US Patients and Clinicians View “Portability Features” as Meaningful FVIII product attributes: Results of a conjoint analysis

Implications on selection of a FVIII treatment product

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PT experts quantify the risk of bleeding associated with a specific activity and factors to decrease risk

Results from the Activity-Intensity-Risk (AIR) Survey and Consensus Meeting of US Physical Therapists were presented in a poster at the annual National Hemophilia Foundation (NHF) meeting.

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Prevalence of obese or at risk individuals in the hemophilia population is now more than 50%

Obesity in the hemophilia community has several negative effects

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Gross motor testing is recommended as part of the annual physical therapy evaluation for patients with hemophilia

In a poster presented at the annual NHF meeting, the authors looked at whether or not gross motor delays may be missed during the annual physical therapy evaluation of young boys with hemophilia.

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Study explores why only some women seek evaluation regarding their hemophilia carrier status

Individuals with a family history of severe hemophilia demonstrated higher levels of knowledge for hemophilia inheritance and bleeding risks to carriers.

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A large US insurance claims database suggests a delay in diagnosis and therapeutic intervention in Women and Girls with Hemophilia (WGH)

The median age of WGH diagnosis and factor therapy initiation was 35 and 37 years old

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Variation in symptoms between hemophilia A carriers during labor and after delivery can lead to different clinical presentations requiring individualized management

There needs to be increased awareness about the challenges Hemophilia carriers A can potentially experience during labor and after delivery

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Physical Activity in Adults with Hemophilic Arthropathy

Adult patients with hemophilia on prophylaxis in Spain were able to walk about 10,000 steps a day without risk of bleeding.

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Impact of Obesity on Dosing of Hemophilia Products

Obesity may impact factor dosing in patients with hemophilia.

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Reports of Joint Outcomes in Hemophilia Patients

Joint Outcomes in United States (US) Hemophilia Patients: a report of the Community Counts Registry

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B-HERO-S Study Highlights Psychosocial Issues in Men and Women with Hemophilia B

B-HERO-S Study reports on the impact of Hemophilia B on men and women with Hemophilia B on education, work and activities.

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B-HERO-S Study Highlights Psychosocial Issues in Boys and Girls with Mild-Severe Hemophilia B

B-HERO-S Study reports on the psychosocial impact of Hemophilia B on affected boys and girls and their families.

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Patients with Noonan Syndrome May Have One or More Bleeding Disorders

ASPHO 2016 (Minneapolis, May 11-14) Patients with Noonan syndrome (NS) may have one or more bleeding disorders according to a comprehensive review presented at the recent 2016 American Society of Pediatric Hematology Oncology annual meeting.

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Bleeding Symptoms In Women With Hemophilia A or B

THSNA 2016 (Chicago, April 14-16): Issues around bleeding symptoms in women with factor VIII or IX deficiency and carriers of hemophilia A and B were discussed during a plenary session

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CDC Data Shows PWH Living Longer

THSNA 2016 (Chicago, April 14-16): The Centers for Disease Control and Prevention (CDC) has been monitoring causes of death and ages of hemophilia patients for decades

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Surgical Procedures Influenced by Age, Severity, Bleed Frequency, Prophylaxis Use

THSNA 2016 (Chicago, April 14-16): Given the frequency of joints as a site of bleeding in patients with congenital hemophilia, it is not surprising that some patients ultimately need some invasive or surgical procedure on their joints as they age.

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ATHN-3 Radiosynovectomy Study

THSNA 2016 (Chicago, April 14-16): One way of treating overgrowth of the synovial lining of joints in patients with hemophilia due to joint bleeding is by injecting a radioisotope into the joint space, called radiosynovectomy.

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UCSF HTC Survey on Intimacy Issues

THSNA 2016 (Chicago, April 14-16): The treatment team at UCSF’s HTC presented results of a survey of their adults at the Thrombosis and Hemostasis Summit of North America (THSNA) in a poster.

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P-FIQ Study Highlights Pain Issues in PWH

THSNA 2016 (Chicago, April 14-16): Recent data from the Pain, Functional Impairment and Quality of Life (P-FIQ) study presented at the Thrombosis and Hemostasis Summit of North America (THSNA) highlight specific issues around acute and chronic pain.

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Laboratory Testing of Inhibitors

THSNA 2016 (Chicago, April 14-16): Factor replacement can be complicated by the development of antibodies that block or neutralize the activity of replacement factor, so called “inhibitors”.

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The CHOICE Project

HFA Symposium (Las Vegas, April 2, 2016) CHOICE was a projected sponsored by the Centers for Disease Control and Prevention (CDC) to try to assess care and needs of patients treated in non-HTC settings

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Zika Virus Updates

HFA Symposium (Las Vegas, April 2, 2016) While Zika is a viral disease transmitted by mosquito bite, Soucie said most people won’t know they have it as they don’t show symptoms; those that show symptoms have mild symptoms lasting for weeks.

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Inhibitor Focus

HFA Symposium (Las Vegas, April 2, 2016) The HFA Symposium featured an inhibitor track that kept inhibitors in focus throughout the meeting

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Dear Addy: A Session to "Ask The Experts"

HFA Symposium (Las Vegas, April 1, 2016) Attendees at the HFA Symposium asked a panel of experts (live and by Twitter) about advocacy, policy, insurance and much more.

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Role of Managed Care and Specialty Pharmacy in Treatment of Hemophilia Patients

NHF 2015 (Dallas, August 13-15) Individualized treatment for patients with hemophilia is very important. Many groups including health care professionals (HCPs), payers and specialty pharmacies are involved in providing care.

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Distinguishing between Signs of a Bleeding Disorder and Abuse

NHF 2015 (Dallas, August 13-15) Healthcare professionals are suggesting that guidelines should be developed to compare the frequency of intracranial hemorrhages and bleeding patterns in a particular bleeding disorder to a patient’s presentation.

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Hemophilia and the Aging Community

NHF 2015 (Dallas, August 13-15) As more hemophilia patients are living longer, they are beginning to develop various conditions that are associated with aging such as cardiovascular disease and falls leading to fractures

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Telemedicine: What is it and how is it useful to me?

NHF 2015 (Dallas, August 13-15) So, next time when you are worried about not being able to make it to your health appointment, remember to ask your healthcare provider about telemedicine

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Characteristics of Factor IX Deficiency

ISTH 2015 (Toronto, June 20-25) Some studies in the past have reported that Hemophilia B patients use lower amounts of factor, use prophylaxis less often, have less hospital admissions, and less joint disease

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Impact of Pain and Functional Impairment In US Adult People with Hemophilia (PWH)

ISTH 2015 (Toronto, June 20-25) Pain and its impact on daily activities and quality of life were noted in each patient-reported outcome with 43.3% reporting having experienced moderate/severe/extreme pain or discomfort.

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Children with Hemophilia (CWH) in the United States

ISTH 2015 (Toronto, June 20-25) A pilot test suggests caregiver burden for hemophilia is greater among those whose child ever had inhibitors.

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The INSIGHT (International Study on Etiology of Inhibitors in Patients with a Moderate or Mild Form of Hemophilia A, Influences of Immuno-Genetic & Hemophilia Treatment Factor) Study

ISTH 2015 (Toronto, June 20-25) The INSIGHT study showed that blood group O was a predictor of factor VIII levels and was associated with higher risk of bleeding in people with hemophilia complications.

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The Effect of Factor Activity Levels and Bleeding Characteristics

ISTH 2015 (Toronto, June 20-25) Analysis of data from US patients with mild and moderate hemophilia suggests that bleeding can occur with baseline factor activity levels, but may be slightly more common in mild/moderate hemophilia A than B.

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Evaluation Of Head Bleeds (Intracranial Hemorrhages)

HTRS 2015 (New Orleans, April 16-18) Intracranial hemorrhages, also known as ICH or head bleeds, have different classifications based upon location and may have different symptoms and treatments.

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Inhibitors in Patients with Non-Severe Hemophilia A

HTRS 2015 (New Orleans, April 16-18) Patients with mild or moderate (non-severe) hemophilia A can also develop inhibitors or antibodies against factor FVIII therapy but at a lower rate (1 in every 10-20 patients) than those with severe hemophilia.

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Cardiovascular Disease In Patients with Hemophilia

HTRS 2015 (New Orleans, April 16-18,) It was believed that hemophilia had a protective effect on patient’s cardiovascular health, but some recent studies suggest that patients with hemophilia might be at a higher risk of cardiovascular disease.

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Impact of Hemophilia on Young Adults in HERO Study

AMCP 2015 (San Diego, April 7-10) A recently completed analysis of young adult patients with hemophilia who had taken part in the HERO study identified specific issues relevant to the transition from adolescence to adulthood.

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Measuring Patient Reported Outcomes in Hemophilia

ISPOR 2015 (Philadelphia, May 16-20) A study of 381 adult patients with hemophilia of any severity with a history of joint pain or bleeding examined the reproducibility and reliability of 5 different patient reported outcome measures (surveys).

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Hemophilia Result in Joint Pain in Young Adults

NHF 2014 (Washington DC, September 18-20): In the US, 189 adults with hemophilia responded to the HERO study questionnaire, out of which 66 were young adult men aged 18-30 years.

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Hemophilia Impacts Young Adult Relationships & Employment

NHF 2014 (Washington DC, September 18-20): In the US, 189 adults with hemophilia responded to the HERO study questionnaire, out of which 66 were young adult men aged 18-30 years. About one third of YA-PWH were married or in long-term relationships.

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Barriers Accessing Treatment at HTCs in US PWH

NHF 2014 (Washington DC, September 18-20): In the US, 66 young men aged 18-30 (median: 26) years responded to the HERO study questionnaire. The reported diagnosis included hemophilia A, hemophilia B and hemophilia A or B with inhibitors.

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