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News & Perspectives

So we passed the law, what next? A summary of the regulatory process

August 31, 2010

The federal regulatory or rulemaking process, like the legislative process, can be lengthy and complicated. The rulemaking process is “the process by which federal agencies develop, amend or repeal rules“.(i) Shortly after passage of Public Law 111-148 and 111-152 (the Patient Protection and Affordable Care Act & the Health Care and Education Reconciliation Act), various […]

Kisa’s Weekend Travels: Hemophilia of Indiana Annual Meeting

August 31, 2010

On聽August 28-29, Hemophilia of Indiana held their annual meeting in Indianapolis.聽聽HFA’s Michelle Burg (Program Director)聽and Lauren聽Neybert (Program Coordinator) arrived Friday night to set-up the HFA聽booth. On Saturday, 聽the morning agenda began with聽a new program called, PEN’s Pulse on the Road (POTR) led by Laurie Kelley, President of LA Kelley Communications, Inc., and sponsored by Baxter […]

Novo Nordisk provides a development update on two new investigational drugs for the bleeding disorders community.

August 30, 2010

The company’s ultra fastacting recombinant factor VIIa is progressing to a phase 3 trial after the successful completion of a phase 2 safety, pharmacokinetics and efficacy trial; the phase 3 trial is currently being designed.聽 A phase 3 trial for the factor XIII drug was recently been completed and showed that, compared to a historic […]

New York City Hemophilia Chapter

August 11, 2010

Click here For the Immediate Release聽 New York City Hemophilia Chapter Names Glenn Mones Director of Communications New York, NY – August 10, 2010 – The New York City Hemophilia Chapter (NYCHC) has appointed Glenn Mones to the position of Director of Communications, according to chapter President Shari Bender. “We’re thrilled to have Glenn as […]

HFA Adds New Blood Brotherhood Sites

August 10, 2010

FOR IMMEDIATE RELEASE: Monday, August 9, 2010 聽Washington, DC: The Hemophilia Federation of America (HFA) is pleased to announce the addition of two new Blood Brotherhood sites, Hemophilia Foundation of Northern California (HFNC) and Hemophilia Foundation of Minnesota/Dakotas (HFMD). Other states hosting local community support groups include Tennessee, Texas, North Carolina, Arizona, New York, Illinois, […]

Pfizer Receives FDA Approval for Prefilled Dual-Chamber Syringe for Use in the Treatment of Hemophilia A

August 9, 2010

Pfizer Press Release Pfizer is pleased to announce that the U.S. Food and Drug Administration (FDA) has granted approval for the use of a Prefilled Dual-Chamber Syringe for administration of XYNTHA® Antihemophilic Factor (Recombinant) Plasma/Albumin-Free to hemophilia A patients. XYNTHA is an injectable recombinant factor VIII product previously approved by the FDA for both the […]

BioRx President Phil Rielly Wins Ernst & Young Entrepreneur of the Year庐 Award

July 28, 2010

(Cincinnati, Ohio)聽 July 20, 2010 – Philip Rielly, President and Co-founder of specialty pharmacy BioRx LLC, 聽has received the Ernst & Young Entrepreneur Of The Year® 2010 Award in the Healthcare category in South 聽Central Ohio and Kentucky.聽 According to Ernst & Young LLP, the award recognizes outstanding entrepreneurs 聽who are building and leading dynamic, […]

My Camp Family

July 23, 2010

Rocky believes that having hemophilia has provided him with many opportunities and credits his camp family for showing him the right path.

Hemophilia survivor Leeroy Carter turns 90

July 22, 2010

BY JOSHUA JAMERSON FREE PRESS SPECIAL WRITER Posted July 21, 2010 Leeroy Carter is a rare longtime survivor of hemophilia, a bleeding disorder that often shortens the life of those who have it. But the Highland Park resident has far surpassed his peers, becoming the oldest hemophilic in Michigan and the second oldest in the […]

Let Him Go Let Him Grow

July 22, 2010

Dennis and Denise have a teenage son with hemophilia, they encourage their son to focus on school because he needs to find a stable job with good insurance.

Winners announced for 2010 BioRx Educational Scholarships

July 21, 2010

News Release聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 June 21, 2010 (Cincinnati, Ohio)聽聽 BioRx, a specialty pharmacy, and Hemophilia of North Carolina, a non-profit organization that assists and educates persons affected by bleeding disorders, announce the winners of the 2010 BioRx Educational Scholarships.聽 Each of the winners receives a $2,000 scholarship.聽 The scholarships are funded by BioRx through an educational grant, […]

Helping Out a Friend

July 21, 2010

Pam helped Ann through the diagnosis of her son’s bleeding disorder.

Real-World Experience Confirms Low Inhibitor Rate Established in ADVATE Controlled Clinical Studies for Hemophilia Patients

July 14, 2010

Buenos Aires, Argentina, (July 13, 2010) – Baxter International Inc. (NYSE: BAX) today announced final E.U./U.S. post-authorization safety surveillance (PASS) data that support the safety and efficacy profile of ADVATE [Antihemophilic Factor (Recombinant), Plasma/Albumin-Free Method] previously documented in prospective clinical trials in a new study published in the journal Hemophilia. see more…advate_pass

Center for American Progress publishes a report on how health reform saves money

July 12, 2010

By:聽 Michelle Pascucci There has been ongoing discussion on how the new health care law will be paid for and if it will save money. The Center for American Progress released a report detailing how the new law will lower the deficit and create a more efficient and cost effective health care system in the […]

Friendship Through Tough Times

July 8, 2010

Jill & Kathy have supported each other through the toughest of times.

Living Life to it’s Fullest

June 29, 2010

Sean and Lesa talk about their family life and living with a bleeding disorder.

BioRX Announces New National Director of Operations

June 24, 2010

Randy Broyles, RPh has joined BioRx as National Director of Operations. See more…Randy Boyles

The President refers to Nathan and Thomas Wilkes during address today

June 22, 2010

President Obama gave聽speech at the White House to signify 90 days after the health care reform bill was signed into law.聽 The president referred to several families including the Wilkes’.聽 He emphasized that he can not see Americans moving backward through a repeal of the law.聽 He acknowledges the law is not easy nor perfect […]

A Mother’s Story

June 22, 2010

Bert shares her experiences raising two boys with hemophilia.

Growing Up Different

June 22, 2010

Jim, Gio, and Tim talk about their life as young boys with hemophilia.

Blood Safety Update: MSM Donor Deferral Policy

June 15, 2010

The American Plasma Users Coalition -APLUS, formerly known as the Plasma Users Coalition (PUC), testified Friday, June 11, 2010 at the Advisory Committee for Blood Safety and Availability (ACBSA) committee meeting. 聽Mark Skinner of the World Hemophilia Federation spoke on behalf of the APLUS to present the APLUS views on the review of the current […]

Roger the Cactus Farmer

June 11, 2010

Roger, a 67 year old with hemophilia is full of wisdom and life experiences.

American Plasma Users Coalition, A-PLUS, Seeks FDA-Community Research Agenda to Enhance The Safety of Our Nation’s Blood Supply

June 9, 2010

The Department of Health and Human Services, Advisory Committee on Blood Safety and Availability will be reviewing the current Food and Drug Administration (FDA) policy recommending that men wh have sex with another man (MSM) even one time since 1977 should be deferred indefinitely from donating blood. Click here for the Release

Joint Statement on Addressing the MSM Blood Ban by Groups Representing People Living with Hemophilia, Gay Men and People Living with HIV/AIDS

June 9, 2010

The Department of聽 Health & Human Services, Advisory Committee on Blood Safety and Availability will be reviewing the current Food and Drug Administration (FDA) policy recommending that men who have sex with another man (MSM) even one time since 1977 should be deferred indefinitely from donating blood.聽聽Click here for the Press Release.

Dads In Action

June 7, 2010

The HFA offers the Dads in Action Program as an educational and social support system designed to provide Dads with a sense of belonging as well as keys to strengthen the family unit.聽 The program focuses on building strong family ties within the context of having a bleeding disorder.聽 Program participants include both fathers of […]

Barry Haarde reaches out through ministry & exercise

June 3, 2010

Bleeding Disorder Community member Barry Haarde reaches out through ministry and exercise. For more information click here

Hemophilia Alliance Donation

June 3, 2010

The Hemophilia Alliance has just completed the 2010 funding cycle, again this year they have donated in excess of $300,000 to the hemophilia community. Alliance Foundation pdf

Bleeding Disorders Family Meets President Obama

May 21, 2010

The Forbes family shares their story of visiting the Oval Office.

Preservation of Right to Maintain Existing Coverage – Section 1251 (Part II – Other Provisions)

May 17, 2010

Provision SEC. 1251 (a) NO CHANGES TO EXISTING COVERAGE.鈥 (1) IN GENERAL.鈥擭othing in this Act (or an amendment made by this Act) shall be construed to require that an individual terminate coverage under a group health plan or health insurance coverage in which such individual was enrolled on the date of enactment of this Act. […]


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