United in Progress

United in Progress is the tag line for a unique collaborative effort to speed progress in identifying, understanding and treating hemophilia: My Life Our Future. Increasingly in the area of rare disease, it is partnerships between disease specific advocacy groups, pharmaceuticals companies, academic researchers, genetic testing laboratories, software developers, and patients which are leading to new insights and new treatments.

My Life Our Future is a genotyping initiative which has as its founding members:  Bloodworks Northwest, the American Thrombosis and Hemostasis Network, Bioverativ, and the National Hemophilia Foundation. This conglomerate works with and through the network of Hemophilia Treatment Centers.

The program is FREE, and provides genotyping for those with hemophilia A (F8) and hemophilia B (F9) and for carriers and potential carriers. More information about carriers of hemophilia can be found in the straight forward and plainly written brochure available through the World Federation of Hemophilia, titled “ Carriers and Women with Hemophilia”. This can be found on line at www.WFH.org/en/resources. Carrier mothers can find out if their daughters are or are not carriers.

What does this mean for families with bleeding disorders? On a practical and personal level, it means individuals can find out the specific allele mutation of their bleeding disorder. This can be helpful in evaluating how severe it might be, and it may help to identify their risk for developing an inhibitor. All daughters of males with hemophilia will be carriers. Carrier mothers can find out if their daughters are or are not carriers. For family members knowledge of carrier status is helpful for being alert to potential bleeding  issues, especially important in pregnancy and may help decision making in family planning.

A carrier’s factor level can be checked at the HTC. On the community level, you can allow your results to contribute to research science, while protecting your privacy. Pooled results are invaluable for understanding how to better evaluate and treat bleeding disorders. Such testing can also help relieve anxiety. Knowledge of genotype can lead to preparedness. Scientists have already identified more than 4000 different genetic mutations which can result in a bleeding disorder. Knowledge is power!

Share this post

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email

What are your thoughts on being a rare disease advocate? Share your stories, thoughts, and hopes with the Patient Worthy community!

Close Menu