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Valeria De Los Ángeles Colon Quiles is 20 years old and coming from Puerto Rico. She is currently pursuing her senior year of bachelor’s degree in business administration majoring in Public Accounting. She is currently working as an accounting assistant in a local accounting firm. She is one of three children and a Hemophilia A patient. She shares the condition with her little brother and she is part of the Puerto Rican Association of Hemophilia.
Mathilde, 37 and a severe hemophilia A carrier. "The disease was passed on to me by my father. So it's a family story that we talk about regularly, especially with my partner. It's never been taboo in my family. I gave birth in a type 4 maternity hospital, under a protocol drawn up by a haematologist. My 6-year-old daughter has been diagnosed with mild hemophiliac. I'm a technician in the entertainment industry and the disease has never been a hindrance to me."
Dr. Sidonio graduated from UAB medical school, completed his pediatric residency at the University of Louisville and completed his fellowship at the University of Pittsburgh where he also obtained his Masters in Clinical Investigation. Dr. Sidonio has been the Director of Hemostasis and Thrombosis Clinical Operations at Emory University since 2014. Dr. Sidonio has pilot studies focusing on quality of life and menstrual bleeding treatment in hemophilia carriers and women with low VWF and is the lead PI of the Emicizumab PUP and Nuwiq ITI trial, MOTIVATE ITI Study, Wilate prophylaxis study, Mexico Inhibitor Cross-sectional study and SAFE study. He is a board member of HTRS, HFA, medical advisor for FWGBD and MASAC, THSNA Summit C-Chair and Co-Chair of Women’s Health ISTH SSC.
Noemy E. Diaz-Burgos is a second-year M.A. in English Literature student at Florida International University where she is completing her thesis on Afro-Caribbean Literature. In addition to her graduate studies, she is an adjunct professor at FIU for first-year English courses. This summer, she completed internships with Congresswoman Jennifer Gonzalez-Colon (PR-AL) and the Hemophilia Federation of America as a Government Affairs & Policy Intern. In the past, Noemy has worked with the Hispanic Federation helping Puerto Ricans displaced by Hurricane Maria find resources and with the U.S. Department of State as a recruitment intern for the region of Florida and Puerto Rico.
An experienced non-profit executive and strategic communications professional with more than 20 years of experience in both the non-profit and private sectors, Sarah Ford currently holds the position of Chief Executive Officer of the Canadian Hemophilia Society (CHS). Prior to joining the CHS, Sarah held several leadership positions at both an international level and within her local community. Most recently, she was the Executive Director of the Montreal West Island Women’s Centre (WIWC) which works to improve the quality of life for women at a community level through affordable and free development programming. Before the WIWC, Sarah worked with the World Federation of Hemophilia (WFH) for over 10 years, holding several positions including WFH Director of Strategic Communications and National Director of WFH USA. Sarah served as the Vice President Communications on the Board of Directors for the Montreal Council of Women and also served on the Board of Directors for Educonnexion.
Silvina Graña is a Psychologist, with a specialization in Clinical Psychology. She has worked at the Foundation of Hemophilia in Argentina with children, teenagers and their families since 1994. She has been coordinating workshops and meetings with teenagers and their families at the Foundation and its provincial branches for more than 29 years. She is the vice-chair of the WFH Psychosocial Committee. She has been a speaker and facilitator of workshops since 2001 in Latin-American countries and a reviewer of the Haemophilia journal since 2018. Silvina is the head of the Accompanying Parents Program, a volunteer group of parents with children with hemophilia. She has written a booklet for schools with this group. In addition, she is the author of “Let me tell you a Story”, a collection of books for children related to hemophilia and comprehensive care, and “My special friend, Pancho”, a video for teenagers. She writes articles regularly in the magazine Conocernos, a publication of the Fundacion de la Hemofilia Argentina. Her working field includes: Individual and family psychotherapy, Follow-up for families, Assistance to hospitalized patients, School advice, Preventive and psycho-educational programs, Outings, Camps and Women support groups.
Takeda decidió voluntariamente sustituir los dispositivos de reconstitución BAXJECT II y BAXJECT II Hi-Flow producidos por el fabricante de dispositivos contratado por Takeda entre octubre de 2021 y enero de 2022. Esta es una medida precautoria debida a la posible presencia de partículas en el puerto luer del dispositivo. El problema está relacionado con el dispositivo y no con la calidad del producto de tratamiento, ni con cualquier otro componente del paquete. Ninguno de los eventos adversos reportados en las bases de datos de seguridad mundial de Takeda se atribuyó a la presencia de partículas en los dispositivos BAXJECT II/BAXJECT II Hi-Flow.
El Fondo de viaje de Hemophilia Alliance ofrece a miembros voluntarios de los comités de la Federación Mundial de Hemofilia (FMH) la oportunidad de participar en eventos mundiales de la FMH, ya sea como ponentes o como asistentes. En mayo pasado, tres receptoras de subvenciones del Fondo de viaje de Hemophilia Alliance participaron en la Cumbre de la FMH sobre atención integral que se realizó en Buenos Aires, Argentina. Provenientes de diferentes sectores, las receptoras participaron por diferentes motivos, pero todas obtuvieron una experiencia enriquecedora similar, la cual les ayudará a mejorar la atención para las personas con trastornos de la coagulación (PCTC) a quienes atienden.
Dawn has been a leader in the bleeding disorders community for many years. As a parent of a son with hemophilia, she founded the Rocky Mountain Hemophilia & Bleeding Disorders Association in Bozeman, Montana, served as its Executive Director, and began their Family Camp. After moving to Pittsburgh, Pennsylvania, she served as a board member for the Hemophilia Center of Western Pennsylvania for six years and then as Executive Director of the Western Pennsylvania Chapter. She has been with the National Bleeding Disorders Foundation (formerly named National Hemophilia Foundation) for 14 years and serves as Chief Operating Officer. Dawn serves on the Board of Directors for the World Federation of Hemophilia and World Federation of Hemophilia USA. Dawn proudly chairs the Women and Girls with Bleeding Disorders and the Hemophilia Organization Twin Committees for WFH. She holds a Bachelor of Science from Montana State University in Bozeman.