Monday, August 9, 2010

 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, Indiana, Oregon and Maryland. Click Here for the Press Release

Wednesday, March 10, 2010

Washington, D.C.:  There is no doubt that the social media trend has changed how the world communicates. From world events and tragedies to simply linking people together in a personal day-to-day style, social forums like Facebook have made an impact.  At the Hemophilia Federation of America (HFA), this is also true.  HFA has reached an important milestone of 2,010 Facebook fans in 2010, a goal set last fall that seemed a stretch goal, at best, at the time. Today, it is a reality.

“We are delighted to reach this goal so early in the year,” states Kimberly Haugstad, HFA Executive Director.  “Reaching 2,010 so quickly illustrates an important need that we can fill.  Even in our age of technology, people are ultimately about connections, relationships and sense of community.  Research certainly cites this and now we can demonstrate this through practical use.”

Begun in July 2009 as a new avenue to reach the grassroots constituency of HFA, Facebook has become a key communication method for the organization’s outreach efforts.  It is focused, relatively inexpensive and has proven to be an effective way to reach people.

Maintaining a Facebook fan page is not without the continued challenge of always keeping the content engaging and interesting. “It is a not too much, nor too little of a balance to stay fresh,” notes Katie Whittle, HFA’s Program Coordinator who manages the Facebook page. “I’m proud to be a part of making this a reality and thrilled we’re reaching so many.”

Fans vary across a wide demographic, reaching parents, friends, supporters, other family members and individuals impacted by bleeding disorders. An interest in the cause is the glue that brings them together.  “We provide a variety of practical information for individuals as well as an ongoing self-advocacy message. Above all, we’re reaching out to help make connections and offer our support,” says Whittle.   

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The Hemophilia Federation of America is a national 501(c)(3) organization consisting of 30 member organizations and numerous individual members who offer assistance and grassroots advocacy on behalf of the bleeding disorders community.   Incorporated in 1994, the HFA provides programs and services to improve the quality of life for persons with hemophilia and von Willebrand disease (VWD).

For more information, visit our website at www.hemophiliafed.org or call 1-800-230-9797.

HFA CONTACT:  Susan Swindle, Development Director | 713.203.8548 | s.swindle@hemophiliafed.org

Exel/Exelint Huber needles,
Exel/Exelint Huber Infusion Sets
Exel/Exelint “Securetouch+” Safety Huber Infusion Sets

Audience: Hospital Risk Managers, Surgical Service personnel

FDA notified healthcare professionals of a Class I recall of Exel/Exelint Huber needles, Exel/Exelint Huber Infusion Sets and Exel/Exelint “Securetouch+” Safety Huber Infusion Sets, manufactured by Nipro Medical Corporation for Exelint International Corporation due to ‘coring’, the cutting or dislodging of silicone cores or slivers from the ports into which they are inserted. Huber needles are used to access ports implanted under the skin of chronically ill patients for repeated access to veins for the withdrawal of blood and infusion of medication, nutritional solutions, blood products, and imaging solutions.

Inspections conducted in October 2009 of Nipro facilities found that their needles “cored” in 60 to 72 percent of tests. The reason for this coring is related to design and manufacturing processes, which the FDA continues to investigate and will update the public if there are new developments.

Hospitals, clinics and patients who have needles from these lists should immediately stop using these affected products and return any unused products to Exelint International Corporation.

There are more than 2 million units impacted by this recall in distribution nationwide. Recalled needles were manufactured from January 2007 to August 2009. Units subject to recall have a lot number that begins with “07,” “08,” “09,” and one of the product codes or catalog numbers noted in the FDA news release.

Read the complete MedWatch 2010 Safety summary, including a link to the FDA News Release, at:

http://links.govdelivery.com/track?type=click&enid=bWFpbGluZ2lkPTcwMDQ5MSZtZXNzYWdlaWQ9UFJELUJVTC03MDA0OTEmZGF0YWJhc2VpZD0xMDAxJnNlcmlhbD0xMjE1NjYxMDI3JmVtYWlsaWQ9ay5oYXVnc3RhZEBoZW1vcGhpbGlhZmVkLm9yZyZ1c2VyaWQ9ay5oYXVnc3RhZEBoZW1vcGhpbGlhZmVkLm9yZyZleHRyYT0mJiY=&&&100&&&http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm198728.htm

Washington, DC:  The Hemophilia Federation of America (HFA) expresses its concern regarding the ongoing labor issues involving the Teamsters Local 929 and the American Red Cross of Pennsylvania /New Jersey. The national blood system depends on skilled workers to provide clean, safe blood to laboratories. The blood is distilled into products such as clotting factor for use in treating hemophilia and von Willebrand disease.

The Division of Blood Services at the American Red Cross forms an integral link in America’s blood supply. We would encourage the American Red Cross to re-commit itself to maintaining a safe, clean, and healthful presence inside America’s larger health infrastructure.

Blood collection at the Red Cross continues to be subject to a sixteen-year-old consent decree stemming from Federal Court action. The nature of this civil matter raises serious questions. The ongoing contract impasse and labor action serve as just the latest evidence of a pattern of behavior which seems to place cost ahead of the health and well-being of both workers and end-users of blood products. 

When blood safety is threatened by the business cycle, it is of grave concern. The safety of the blood supply remains our highest priority. To this end, we call on all institutions serving users of blood products to place safety concerns ahead of cost. We, as consumers, saw first-hand the dire consequences of allowing the shadow of cost weigh too heavily on public health outcomes, as some ten-thousand people with hemophilia contracted HIV/AIDS and/or Hepatitis C.  

The Hemophilia Federation of America calls on all of the parties to re-double their efforts and move towards a speedy and equitable end to this current labor stalemate. It is our belief that doing so is in the best interest of all parties concerned. 

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The Hemophilia Federation of America is a national 501(c)(3) organization consisting of 30 member organizations and numerous individual members who offer assistance and grassroots advocacy on behalf of the bleeding disorders community.   Incorporated in 1994, the HFA provides programs and services to improve the quality of life for persons with hemophilia and von Willebrand disease (VWD).

For more information, visit our website at www.hemophiliafed.org or call 1-800-230-9797.

HFA CONTACT:  Susan Swindle, Development Director| 713.203.8548 | s.swindle@hemophiliafed.org

Washington, DC:  The National Organization for Rare Disorders (NORD) recently approved the Hemophilia Federation of America (HFA)for membership.  One of 150 member organizations, the HFA is excited about the opportunity to participate with NORD on important public policy, advocacy, awareness and educational issues.  Certain standards and requirements must be met and approved by the NORD Board of Directors for national membership. 

Kisa Carter, HFA Public Policy Director, is excited about the opportunity to join NORD’s network of rare disease organizations. “This will give HFA an opportunity to collaborate with rare disease organizations across the country to represent 30 million Americans with rare diseases.”  

NORD is a national organization dedicated to helping people with rare “orphan” diseases and assisting organizations that serve them.   NORD is also named as the United States sponsor of World Rare Disease Day set to take place annually on February 28.  HFA will join NORD as a Rare Disease Day Partner in 2010 to recognize and promote awareness of this day.   To learn more about NORD, please visit its website at http://rarediseases.org/info/about.html.

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The Hemophilia Federation of America is a national 501(c)(3) organization consisting of 30 member organizations and numerous individual members who offer assistance and grassroots advocacy on behalf of the bleeding disorders community.   Incorporated in 1994, the HFA provides programs and services to improve the quality of life for persons with hemophilia and von Willebrand disease (VWD).

For more information, visit our website at www.hemophiliafed.org or call 1-800-230-9797.  

HFA CONTACT:  Susan Swindle, Development Director| 713.203.8548 | s.swindle@hemophiliafed.org

 Washington, DC:  The Hemophilia Federation of America (HFA) held its first Advocacy Intensive weekend October 2 – 5, 2009.  The program is a best practice model for bringing HFA social advocacy programs full circle and encouraging members of the bleeding disorders community to reach their  full potential through role modeling and self advocacy.

 “It was a wonderful group to work with. The participants were eager to learn and we applaud their determination and enthusiasm to become dedicated community advocates,” states Kisa Carter, HFA’s Public Policy Director. 

 All participants expressed appreciation for the opportunity to become stronger advocates for the bleeding disorders community. One participant stated, “The name ‘Intensive’ is clearly appropriate.  From start to finish, the weekend was incredibly planned and full of useful information and experiences.” Feedback from another participant commends the HFA for an invitation to “a valuable learning tool in advancing [my] abilities as a community advocate.” 

 The program is delivered during an intense three to five days of experiential learning where participants engage in a variety of hands-on activities including team building and communication exercises, special projects and training on the legislative process.  The participants also authored their own “Personal Story” and delivered it to legislators on Capitol Hill.       

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The Hemophilia Federation of America is a national 501(c)(3) organization consisting of 30 member organizations and numerous individual members who offer assistance and grassroots advocacy on behalf of the bleeding disorders community.   Incorporated in 1994, the HFA provides programs and services to improve the quality of life for persons with hemophilia and von Willebrand disease (VWD).

For more information, visit our website at www.hemophiliafed.org or call 1-800-230-9797.

 HFA CONTACT:  Susan Swindle, Development Director |713-203-8548| s.swindle@hemophiliafed.org

Washington, DC:   Imagine having the opportunity to visit the Oval Office and meet the President of the United States.  This opportunity became a reality for 12-year old Emmanuel Forbes with severe hemophilia complicated by an inhibitor, his five siblings and parents, Michael and Jane Forbes. Emmanuel was granted his wish through the Make-A-Wish Foundation.   The Foundation “grants the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.” The entire family travelled from Upland, California to Washington, DC to meet the President on September 14, 2009. 

 It is not every day a family from the bleeding disorders community gets a “sit down” meeting with the President.   Katie Whittle, HFA’s VOICES Campaign Coordinator had an opportunity to capture the Forbes’ sentiments prior to their meeting in the Oval Office.  Jane Forbes, a Registered Nurse, is thankful the President is addressing the health care system in America.  She wants the President to understand the challenges “uninsurable” families face because of the broken health care system.  Jane and Michael appreciate that the President recognizes there is an issue, but important issues such as insurance reform, are still very unclear to families across the country.

The children, Raphael, Gabriel, Michael, Emmanuel, Rachel and Ariel, expressed gratitude and were excited for such a rare opportunity.  Twelve-year-old Emmanuel wanted to tell the President “he is a really good leader and he is cool.”  Ten-year-old Ariel told Katie she just wants to ask the President if she can have a play date with his daughters. The kids were thrilled about the opportunity to meet and play with “Bo,” the President’s dog.

Their trip to Washington, DC did not end at the Oval Office.  The Forbes family took the time to visit their legislators too.  A meeting with Senator Barbara Boxer and Congressman David Dreier was invaluable to the Forbes family.   Michael and Jane had the chance to educate both members on hemophilia and the kids were excited about playing  the pinball machine in the Congressman’s office at the Capitol. 

The opportunity to meet the President, Senator Boxer, and Congressman Dreier was a unique experience, but the Forbes’ are no strangers to sharing and collecting stories.  Michael and Jane Forbes have been active in the hemophilia community for many years.  Five of their children have hemophilia and two of the five have inhibitors. Both have researched and collected stories from hundreds of families with hemophilia and other rare disorders.  Their research culminated in the publication of a book entitled “Surviving the American Medical System in the 21^st Century,” which Emmanuel shared with the President and both members of Congress. 

Towards the end of their eventful meeting, the President thanked Emmanuel for a copy of the book and thanked the family for sharing their story.   The President concluded by saying “We are trying to help families just like yours.”  The Forbes left feeling assured the President is trying to help families challenged by the health care system.   

The bleeding disorders community has an opportunity to have their wishes granted.  The Forbes had a rare opportunity to meet the President but more importantly, they had a chance to share their story.  Mike, Jane and their children, like many other families, just want the President and Congress to appreciate what families with rare, chronic disorders must face. 

Help the Forbes’ by expressing your health care challenges and the need for reform that families understand.  Do not miss this opportunity for your wish to be granted! 

For more information about your opportunity to be HEARD, contact HFA and share your VOICE.

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The Hemophilia Federation of America is a national 501(c)(3) organization consisting of 30 member organizations and numerous individual members who offer assistance and grassroots advocacy on behalf of the bleeding disorders community.   Incorporated in 1994, the HFA provides programs and services to improve the quality of life for persons with hemophilia and von Willebrand disease (VWD).

For more information, visit our website at www.hemophiliafed.org or call 1-800-230-9797.

 HFA CONTACT:  Kisa Carter, HFA Public Policy Director | 202.675.6984| k.carter@hemophiliafed.org

 Washington, DC:  The Hemophilia Federation of America (HFA) launched its first online community social networking medium in July 2009.  HFA’s official Facebook site is designed to make connections and build relationships with community members across the country. On September 19, 2009, just two months after the page was created, HFA met its 2009 year-end goal of reaching 1,000 fans.

“HFA could not have met its goal of 1,000 fans without the help of the community suggesting to their friends and family to join HFA’s page.  It’s fun each day to watch the numbers of fans climb so quickly.  The HFA Facebook page is a great place for dialogue with other people in the community, to ask questions, seek advice, and encourage others,” states Katie Whittle, Social Networking Coordinator.

The HFA Facebook page offers an excellent medium for community outreach. The official site offers a variety of information including links to important legislative updates, HFA blogs, press releases, program updates and the Voices Campaign.  The HFA welcomes feedback and community dialogue on the site.

To visit the official HFA Facebook page go to: http://www.facebook.com/hemophiliafed

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The Hemophilia Federation of America is a national 501(c) (3) organization consisting of 30 member organizations and numerous individual members who offer assistance and grassroots advocacy on behalf of the bleeding disorders community.   Incorporated in 1994, the HFA provides programs and services to improve the quality of life for persons with hemophilia and von Willebrand disease (VWD).

For more information, visit our website at www.hemophiliafed.org or call 1-800-230-9797.

HFA Contact:  Susan Swindle, Development Director Phone: 713-203-8540 Email: s.swindle@hemophiliafed.org