Gateway Hemophilia NewsHFA Symposium 2012March 6th, 2012 Embracing Our Future through Advocacy, Fitness & Technology. March 30-31, 2012 at the Marriott Santa Clara. Register on line at: www.hemophiliafed.org. Posted in Education Bleeding Disorders Day In MissouriMarch 6th, 2012 Join us March 21st in Jefferson City. We will meet at the capitol at 10:00 a.m. and hear from Rep. Molendorp and get an update on health care in Missouri. This is a great time to share your personal story, thank your elected officials for their support and continue to stress the importance of access to care for our community! For more information or to get an appointment set up with your representative, please call Kristin Marema, Midwest Hemophilia Association Advocacy Chair at 573-529-1636. Posted in Advocacy 2012 Camp NotaclotamongusFebruary 29th, 2012 SAVE THE DATE: June 6-9, 2012. Now is the time to start thinking about GHA’s summer camp for kids with bleeding disorders. Any child with a bleeding disorder or a diagnosed carrier of a bleeding disorder ages 7-17 are invited to join us this year for our “Game Show Camp”. Follow the like below to our Camp Page to print off your application. The deadline for early registration is May1, 2012 with a registration fee of $25. After May 1st there is an increase fee of $35,and no applications will be accepted after May 15th. If you have any questions you can email GHA at info@gatewayhemophilia.org or call (314) 482-5973. We hope to see you this summer!!!! Missouri Bleeding Disorder DayFebruary 24th, 2012 From MHA Advocacy Chairperson Kristin Marema. We have officially announced that our Bleeding Disorders Day in Missouri will be Wednesday, March 21st in Jefferson City. We will meet at the capitol at 10:00am. We will hear from Representative Molendorp and get an update on health care in Missouri. We mill meet with our elected officials. (Each patient / family should contact me first and I will set-up their appointment.) Lunch will be provided. This is a great time to share your personal story, thank your elected officials for their support and continue to stress the importance of access to care for our community! All families, treatment center staff and industry members are invited to attend. MHA is now on Facebook (so please “Like” us) and check out the event page for this day, as well as the MHA web site for further information. Thanks again, Again, please RSVP to Kristin, and as additional details emerge we will pass along the information. Washington Days 2012February 10th, 2012 Don’t miss your chance to register for NHF’s 2012 Washington Days on March 7-9. Your participation this year is vital. By telling your story, you put a face on real issues that affect individuals and families dealing with bleeding disorders. For more, visit www.hemophilia.org. Posted in Events NHF Scholarship ListsFebruary 10th, 2012 The NHF is now accepting applications for the Kevin Child Scholarship. Applicants must be diagnosed with hemophilia A or B and a high school senior planning on attending college or vocational technical school, or a college student already pursing a post secondary education. Deadline: June 1, 2012. To applyor to view more scholarship opportunities, go to www.hemophilia.org. Posted in Education SAVE THE DATEJanuary 24th, 2012 March 30-31, 2012 – Hemophilia Federation of America Symposium 2012. “Embracing Our Future Through Advocy, Fitness and Technology.” Marriott Santa Clara, 2700 Mission College Blvd., Santa Clara, CA 95054. Register on-line: www.hemophiliafed.org Posted in Events Gene Therapy Trial for Hemophilia B Shows Promising ResultsJanuary 4th, 2012 The first evidence of success in gene therapy for Hemophilia B was published by the New England Journal of Medicine. Six patients with severe Hemophilia B responded to injections of a normal factor IX gene. Read more here. Posted in Education Clinical TrialsJanuary 4th, 2012 Want to know more about clinical trials? Find out what kind of trials are being conducted now and planned for the future at www.clinicaltrials.gov. Click here for those relating specifically to hemophilia. Posted in Education RecallsJanuary 4th, 2012 To be notified directly about the latest recall or withdrawal of recombinant and plasma products, please sign up for the Patient Notification System (PNS). The system is confidential and time sensitive. It is administered by an independent third-party organization and is free of charge. To enroll in the PNS, please go online at http://www.patientnotificationsystem.org/ or call 1-888-UPDATE-U (1-888-873-2838). Posted in Education |
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