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Locality: New York, New York

Phone: +1 212-520-8272



Address: 757 3rd Avenue 10017 New York, NY, US

Website: www.hemob.org

Likes: 2675

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The Coalition for Hemophilia B 30.04.2021

Check out this health update regarding pregnancy-associated bleeding in carriers and women with hemophilia: http://ow.ly/4iuG50EmbIa #hemob #hemophiliab #hemophilia #hemohealth

The Coalition for Hemophilia B 24.04.2021

By Dr. David Clark Chairman Coalition for Hemophilia B There seems to be a lot of concern in the hemophilia community that receiving either of the two adenovirus-based COVID vaccines could prevent you from being eligible for gene therapy in the future. This is not true. Both the Johnson & Johnson and AstraZeneca/Oxford (not yet approved in the U.S.) vaccines use adenoviruses to deliver their DNA to cells. The gene therapy treatments currently being developed use adeno-as...sociated viruses (AAV) to deliver their DNA. In spite of their similar names, adenoviruses and AAV are very different viruses. Antibodies against adenoviruses do not react with AAV. There is no danger that taking an adenovirus-based COVID vaccine will keep you from being able to receive a gene therapy treatment in the future. Note also that adenoviruses are very common. We have all been exposed to them. They are one of the many types of virus that cause the common cold. Therefore, whether you get an adenovirus-based vaccine or not, you already have antibodies against them. In addition, the idea that having pre-existing antibodies to AAV will preclude you from receiving AAV gene therapy is becoming obsolete. At the recent European Association for Haemophilia and Allied Disorders (EAHAD) Annual Congress, uniQure presented results from their Phase III clinical study showing that there was no difference in response to their AAV5 gene therapy among subjects with or without pre-existing antibodies to AAV5. [EAHAD abstracts ABS043, ABS089 and ABS100] Another related misunderstanding is that the vaccines can cause genetic changes in the recipient. That is also not true. In order to cause genetic changes the DNA (J&J and AstraZeneca vaccines) or RNA (Pfizer and Moderna) would have to get into the nucleus of the cells. That doesn’t happen. The nucleus is very highly protected. The DNA/RNA is only deposited into the main body of the cell, not the nucleus. In the cell, the DNA/RNA is used to produce copies of the coronavirus spike protein and then is quickly degraded. The body doesn’t like having stray pieces of genetic material, DNA or RNA, hanging around. It is full of nucleases (enzymes that break down nucleic acids) to take care of that. It is important for everyone who can to get the COVID vaccines to protect yourself and those around you. The risk of death and disability from COVID is much, much greater than the risk from the vaccines. The virus is rapidly mutating to become even more dangerous, and if we don’t get it under control, we could have an even worse problem in the future. Please get vaccinated and continue to wear your mask.

The Coalition for Hemophilia B 04.04.2021

Register today: Young adult mentors/volunteers learn how to lead small groups, then get paired with teens to experience fun challenges and tackle meaningful discussions about living with a chronic medical condition. http://ow.ly/RUrx50EmF3K #hemobevents #hemob #hemophilia

The Coalition for Hemophilia B 21.03.2021

#WHD is about bringing our global community together, adapting to change and care in a new world. A world we each play an important role in! We are all in this together. Share with us how you have adapted during this unique time. #hemob #hemophilia

The Coalition for Hemophilia B 19.03.2021

Download your free copy of this mental health handbook that speaks directly to issues in the bleeding disorders community: http://ow.ly/RNqX50Embz4 #hemob #hemophiliab #hemophilia #mentalhealth