Gateway Hemophilia News

SAVE THE DATE

janies — Tue, 24 Jan 2012 14:38:39 +0000

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

Gene Therapy Trial for Hemophilia B Shows Promising Results

janies — Wed, 04 Jan 2012 18:58:28 +0000

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.

Clinical Trials

janies — Wed, 04 Jan 2012 18:52:42 +0000

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.

Recalls

janies — Wed, 04 Jan 2012 18:48:40 +0000

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).

Learn About Inhibitors

janies — Wed, 04 Jan 2012 18:45:57 +0000

Inhibitors can be a serious problem for people with bleeding disorders. Inhibitors are a type of antibody produced by the body’s immune system in response to factor concentrate. By neutralizing the effect of the factor product, they can prevent the formation of blood clots. Read more ….

Let’s Cook!

janies — Wed, 16 Nov 2011 13:51:52 +0000

With the holidays here, we are all planning that favorite dish to serve our family and friends. Why not share it with your GHA family? We are still looking for recipes for soups, sauces, salads, appetizers, desserts and entrees. We can’t finish our cookbook without your help. Please share your delicious family recipes with us by sending them to info@gatewayhemophilia.org. Send as many as you want! It will be so yummy!

GHA’s Annual Holiday Party

janies — Wed, 09 Nov 2011 19:38:19 +0000

What better place to have a holiday party than the Magic House! Join us on December 11 from 6-8 p.m. for cookies, Santa, and loads of fun at the Magic House. To R.S.V.P., call the office: 314-482-5973.

Volunteer

janies — Thu, 27 Oct 2011 13:36:01 +0000

Volunteers are one of the most important elements in a successful community organization. At GHA, volunteers are actively involved on our board and on our committees for the many activities offered to our Community each year. Make 2012 your year of involvement and commitment to GHA. Call today to see how you can be a part of this vibrant and essential community organization. 314-482-5973

Traveling During the Holidays?

janies — Thu, 27 Oct 2011 13:19:15 +0000

Find an HTC located near your holiday destination by checking the CDC’s website, http://www.cdc.gov/ncbddd/hemophilia/HTC.html. You can find hemophilia treatment centers, search for the names and contact information of treatment centers and staff, create and save lists, print mailing labels and send emails.

Games to Play

janies — Wed, 26 Oct 2011 20:45:35 +0000

The World Federation of Hemophilia (www.wfh.org) has a section with games for young people (Memory Game, Web Book, Find the Factor). It is called Hemoaction! Your Hemophilia Adventure. To access the site, click on www.hemoaction.org.