Une association de défense des personnes atteintes de maladies rares a octroyé une bourse de recherche sur la maladie d'Erdheim-Chester afin de mener une étude auprès des survivants.
Uplifting Athletes is a nonprofit organization focused on using the platform of college football to shine a spotlight on rare diseases. Founded in 2007, Uplifting Athletes funds research and other initiatives, bringing hope to rare communities. Each year the organization grants research dollars through their Uplifting Athletes Young Investigator Draft. Proudly, this year a doctor nominated by the Erdheim-Chester Disease Global Alliance (ECDGA) was selected as a grant recipient!
Goyal contribue régulièrement à la sensibilisation et à l'éducation en collaborant et en partageant les données issues de ses travaux sur l'histiocytose.
The nominee, Dr. Gaurav Goyal is an Assistant Professor of Hematology-Oncology and ECD Care Center lead physician at the University of Alabama Birmingham. He will be awarded a $20,000 grant for a Histiocytic Disorders Survivor Study (HDSS). Results from the study will be used to help devise guidelines for the follow-up care of ECD and other histiocytosis patients and develop intervention strategies in the future to mitigate long-term complications. Dr. Gaurav adds, “The study aims to utilize the ECDGA Patient Registry to understand the spectrum of long-term health conditions that patients with ECD struggle with, including quality of life and chronic pain.”
The ECD community has had the pleasure and honor of working with Dr. Goyal on multiple projects that have enhanced patient care, increased awareness, and contributed to the science of histiocytosis across the board. Dr. Goyal is a dedicated physician in his field who is passionate about helping patients and families every single day.
Neuf lauréats seront mis à l'honneur lors de la cérémonie « Uplifting Athletes Young Investigator Draft » 2022, qui se tiendra le samedi 5 février à Philadelphie, en Pennsylvanie.
Research is a mission-critical goal for the ECD Global Alliance. Working with the Uplifting Athletes team to bring more research to fruition has been an honor. In the past, grant funding for ECD research has solely come from private donations, whereas the UA opportunity brings another $10,000 to the initiative. By collaborating with a rare disease group that values the important work of discovery in rare science, The ECDGA has extended ECD research efforts. The ECDGA will continue to strengthen its connections with the rare community to aid in a firm foundation for histiocytosis care worldwide. These connections not only help with ECD and histiocytosis research but also help to raise awareness of ECD within the medical community.
La maladie d'Erdheim-Chester est considérée comme une néoplasie histiocytaire (un type de cancer du sang), une affection extrêmement rare dont la cause est inconnue et qui est souvent sous-diagnostiquée. Cette maladie se caractérise par une accumulation d'histiocytes, des cellules qui combattent normalement les infections, dans les tissus et les organes. Les tissus et les organes deviennent denses et fibrotiques en raison de l'infiltration des histiocytes, ce qui peut entraîner une défaillance organique si aucun traitement efficace n'est trouvé.
Le Alliance mondiale ECD est une association à but non lucratif de type 501(c)(3) qui se consacre à la sensibilisation, au soutien, à l'éducation et à la recherche concernant la maladie d'Erdheim-Chester.