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Preview of Mom’s Blog: The Power of Unconditional Love

February 14, 2013

                My mother and grandmother always warned me, but I never understood it until I experienced it first hand.聽聽I’m not even really sure it’s fair to say I felt it in the preceding nine months – (it was actually pretty hard to feel much of anything beyond all […]

NY Times: Dispute Develops Over Discount Drug Program

February 12, 2013

By: Andrew Pollack聽 When a private oncology practice in Memphis formed a partnership with a nearby hospital in late 2011, the organizations proclaimed that the deal would 鈥渢ransform cancer care鈥 in the region. What they did not emphasize was that the deal would also create a windfall for them worth millions of dollars a year, […]

A Stronger and Healthier Body Means Less Bleeding

January 31, 2013

  I have hemophilia. When I was a in school, my parents told me that I couldn鈥檛 play football, baseball, soccer, or other contact sports, because I was a 鈥渂leeder.鈥 I always wondered growing up, what does being a bleeder even mean? All I knew was that I bruised easily and wasn鈥檛 going to die […]

Biogen’s Hemophilia Drug Meets Late-stage Trial Goal

October 4, 2012

(Reuters) – Biogen Idec Inc said on Wednesday its experimental treatment for patients with hemophilia B, a rare inherited blood disorder that impairs coagulation, met the main goal of controlling bleeding in a late-stage trial. A single injection of the long-lasting clotting factor, being developed in partnership with Swedish Orphan Biovitrum, controlled bleeding in 90.4 […]

Largest health insurer to keep key parts of law regardless of court ruling

June 11, 2012

Largest health insurer to keep key parts of law regardless of court ruling from the Washington Post:聽http://www.washingtonpost.com/national/health-science/largest-health-insurer-to-keep-key-parts-of-law-regardless-of-court-ruling/2012/06/10/gJQA7VYfTV_story.html?tid=pm_pop By N.C. Aizenman,聽Monday, June聽11,聽12:11聽AM The nation’s largest health insurer will keep in place several key consumer provisions mandated by the聽2010 health-care law聽regardless of whether the statute survives Supreme Court review. Officials at UnitedHealthcare will announce Monday that whatever […]

Be Active – Interview with Paul Brayshaw

April 11, 2012

This interview was recorded while Paul was participating in the first annual Gears for Good Bike Ride. He talks about the support and encouragement he received from his parents, and how he will lead by example when sharing life lessons with his newborn son.  

HHS Considering Study on Blood Donation Standards for Gay and Bisexual Men

March 16, 2012

By Jane Norman, CQ HealthBeat Associate Editor The Department of Health and Human Services wants input on how to design a study that would detail under what circumstances men who have a history of sex with other men should be allowed to donate blood. Under current Food and Drug Administration policy, men who have had […]

Terry Lamb is a Lion of Exercise

December 3, 2011

Having hemophilia doesn’t mean you or your child must live a sedentary life or be cut off from good opportunities for becoming fit. Just ask Terry Lamb of Virginia. This 59-year-old supporter of the FitFactor program lifts weights 6 days a week and swims on his day off. Back when Terry was born, there was […]

Whatever He Wants: The Cleghorns

July 30, 2011

Choices are important to the Cleghorn family. Before their son Nicolas was born, Tracy and Lance Cleghorn envisioned a world of possibilities for him. “I want him to do whatever he wants to do, whether that’s play football, play rugby, place lacrosse…” says Tracy. “I want him to make that choice. I don’t want that […]

A Hopeful Future

July 12, 2011

Ryan and EJ share their experiences growing up with hemophilia. The future of our community is hopeful with the advancements in care and support from others who understand!

Terry Lamb

July 2, 2011

Terry talks about growing up with hemophilia and how staying active has helped him live a wonderful life!

John Jarratt In Action

June 21, 2011

John Jarratt speaks to a group about growing up with hemophilia. This is a longer piece, so grab a cup of coffee and we promise you will gain some perspective from John’s wisdom!

Grounded In Reality: The Effects of Health Care Reform on Leland Smith

June 7, 2011

For some, the teenage years are the time to dream. But Leland Smith, who has severe hemophilia A, has always had to be firmly grounded in reality. “[Careers] like movie star or athlete aren’t even in the books,” he says wistfully. Leland’s hemophilia comes with a complication called an inhibitor: a resistance to the medication […]

The Importance of Comprehensive Care

June 3, 2011

Watch this video to understand why comprehensive care is vital for people in the hemophilia community to live a long, healthy life. You will hear from individuals who have directly been impacted by comprehensive care and an individual who works in one of the centers and has seen first hand the success of comprehensive care.

Our Journey: The Landseadel Family

May 5, 2011

Anna and Matt have adopted several children, two who have hemophilia. Anna and Matt try to normalize hemophilia as much as they can and realize that Chris and Xander don’t know anything different.

Reid Coleman, A Committed Advocate

March 19, 2011

Reid talks about growing up with hemophilia and the importance of education, self advocacy and social media advocacy.

Women and Bleeding Disorders

March 11, 2011

This video features Sal Livolsi & Linda Wyman-Collins; helping women with bleeding disorders is close to both of these community members hearts. Sal has a wife and son with hemophilia and Lew talks from personal experience of having a bleeding disorder.

Barry Haarde Shares His Fitness Routine

March 3, 2011

My work out schedule includes weight lifting three times a week, and as you know, a great deal of bicycling. I’m currently riding between 100 and 150 miles on weekends and am doing 30 minute spins on a stationary bike 2 or 3 times during the workweek to supplement that. In ’06, before beginning nearly […]

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.

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.

Helping Out a Friend

July 21, 2010

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

Growing Up Different

June 22, 2010

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

Bleeding Disorders Family Meets President Obama

May 21, 2010

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

Rare Disease Day: Feb. 28th 2010

January 14, 2010

Celebrate Rare Disease Day on February 28th 2010!聽 Write your governor to ask for the last day in February to be proclaimed Rare Disease Day in your state.聽聽 Thank you to NORD, the National Organization for Rare Disorders for organizing this event!

Any Port In A Storm

December 19, 2009

The Cleghorn family shares their story of having a young child with hemophilia.聽 They talk about prophylaxis treatment and transitioning from a portacath to to a vein.

Alex & Jim

October 6, 2009

Jim and Alex are two young men with hemophilia.聽 They talk about the positive impact of camp and the importance of advocating for the bleeding disorders community and themselves.

They Need to Hear From Us: Destiny

June 23, 2009

I learned that legislators do want to hear from me.


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