Meetings & Events

American Society of Hematology Annual Meeting and Exposition

December 2-12, 2017; Atlanta, GA

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American Academy of Managed Care Pharmacy

April 23-26, 2018, Boston, MA

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Thrombosis and Hemostasis Societies of North America

March 8-10, 2018, San Diego, CA

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Hemophilia Federation of America

April 26 – 29, 2018; Cleveland, OH

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Hemostasis and Thrombosis Research Society

April 6 – 8, 2017; Scottsdale, AZ

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American Society of Pediatric Hematology/Oncology

April 26 – 29, 2017; Montreal Quebec, Canada

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International Society for Laboratory Hematology

May 4 – 6, 2017; Honolulu, Hawaii

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Musculoskeletal Congress

May 5- 7, 2017; Seoul, Republic of Korea

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International Society for Pharmacoeconomics and Outcomes Research

May 20- 24, 2017; Boston, MA

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International Society on Thrombosis and Haemostasis (ISTH) / Scientific and Standardization Committee (SSC)

July 8 – 13, 2017; Berlin, Germany

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Association of Pediatric Hematology/Oncology Nurses

August 17 – 19, 2017; Palms Springs, CA

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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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Understanding FXIII Deficiencies

Women with congenital FXIII deficiency need to be carefully monitored during pregnancy.

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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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Understanding Half-Life: What does it really mean?

NHF (Orlando, July 21-23): Sue Geraghty led an interactive session at the National Hemophilia Foundation’s Annual Meeting to try to explain to patients and caregivers what exactly half-life means and how it differs between patients and products.

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NHF-MASAC Group Focused on Pain Evaluation and Management

NHF (Orlando, July 21-23): The NHF-MASAC Pain Working Group hosted an interactive session for patients and caregivers at NHF's Annual Meeting focusing on how pain is evaluated and managed at hemophilia treatment centers.

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One in a Million Rare Bleeding Disorders

NHF (Orlando, July 21-23): Dr. Erin Cockrell from Tampa led a very interactive session at the National Hemophilia Foundation’s annual meeting for patients and families with rare bleeding disorders.

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Embracing you Inner Geezer

NHF (Orlando, July 21-23): Dr Barbara Konkle of Bloodworks NW and Dr. Bruce Hough of St. Joseph’s Children’s Hospital discussed haemophilia care in the aging population including issues of cardiovascular disease, hepatitis C, and liver cancer

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Update on Blood Safety and Zika

NHF (Orlando, July 21-23): Mark Skinner, Nathan Schaefer and Mary Gustafson provided an update at the annual National Hemophilia Foundation meeting around blood safety in response to current dialogue in the community around Zika.

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Making Progress for Women with Bleeding Disorders

NHF Session Highlights Issues and Shares Resources for Women with Bleeding Disorders

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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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Improving the Lives of Women with Blood Disorders

ASH 2015 (Orlando, December 5-8) New and upcoming technologies play an important role to improve the lives of women with blood disorders.

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The Effect of Joint Disease on Pain and Functional Impairment

ASH 2015 (Orlando, December 5-8) The Pain, Functional Impairment, and Quality of Life (P-FiQ) study was designed to measure the impact of pain and functional impairment on quality of life (QoL) in adult patients with hemophilia.

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Numeracy in Patients with Hemophilia

ASH 2015 (Orlando, December 5-8) Patients with hemophilia are often exposed to various mathematical concepts throughout their life in relation to treatment, including for example factor levels, bleeding rates, likelihood of developing an inhibitor

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The SIPPET Study

ASH 2015 (Orlando, December 5-8) The global SIPPET study took place between January 2010 and December 2014 with information collected on 251 previous untreated patients (PUPs) less than 6 years of age with severe hemophilia A.

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Evaluating Cardiovascular Risks Factors in the Hemophilia Population

ASH 2015 (Orlando, December 5-8) In recent times, it has been shown that cardiovascular events do occur in men with hemophilia; however a new study shows the rate is indeed lower than the general population.

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Ultrasound Imaging Review

ASH 2015 (Orlando, December 5-8) A study was conducted to evaluate the evidence on the value of ultrasound (US) for the assessment of joint disease related to hemophilia in affected children and adults.

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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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Basics of Clinical Trials

NHF 2015 (Dallas, August 13-15) Clinical trials are research studies that evaluate whether a drug (treatment) is safe and effective for humans.

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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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Women with Bleeding Disorders

NHF 2015 (Dallas, August 13-15) The most common bleeding disorder in women and girls is von Willebrand disease, an inherited disorder that is caused by a defect or deficiency in von Willebrand factor, a protein the blood needs for clotting

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Balance Dysfunction and Falls Risks

NHF 2015 (Dallas, August 13-15) Since people with hemophilia are gradually entering the 65 and over age group, it is very important to be screened for fall risks and to be educated on preventing falls.

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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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What is Half-Life and Why Do I Need to Understand It?

NHF 2015 (Dallas, August 13-15) The concept of half-life is important to understand because it determines the dosing schedule of a drug.

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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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Overview of Rare Bleeding Disorders

ISTH 2015 (Toronto, June 20-25) Life-threatening bleeding can occur in patients with FVII and FXIII deficiency, including bleeding into the head (intracranial hemorrhage or ICH).

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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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Bleeding and Treatment in Factor XIII Deficiency

ASH 2014 (San Francisco, December 6-9) The PRO-RBDD study is a global initiative focused in part on assessment of patients with fibrinogen and factor XIII deficiency over 3 years. To date, 15 sites submitted 109 cases of factor XIII deficiency.

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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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Glanzmann’s Impacts Patients & Caregivers

ASH 2014 (San Francisco, December 6-9) To assess the impact Glanzmann’s Thrombasthenia (GT) has on patients and caregivers, adults with GT and parents of children with GT were requested to respond to an internet survey.

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HCP Identify Unmet Needs in Glanzmann's

ASH 2014 (San Francisco, December 6-9) A survey about unmet needs in patients with GT was disseminated to hematologists and nurses/nurse practitioners. Out of 150 healthcare professionals who responded, 46% were based in HTCs

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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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