Dr. Eli Diamond, Neuro-Oncologist, specialist in Histiocytosis at the Memorial Sloan Kettering Cancer Center in New York.
Exploring new collaborations in scientific studies on Histiocytosis.
Yesterday we had a telematic meeting with Dr. Eli Diamond, Neuro-Oncologist, specialist in Histiocytosis at the Memorial Sloan Kettering Cancer Center in New York.
We talked to deepen and get to know first-hand the studies that he carries out in the field of Neuro-oncology, and to explore possible ways of collaboration with OR Association in these studies.
Dr. Diamond cares mostly for adult patients with Histiocytosis and ECD, but from the conversation we had, he was very interested in the work OR Association is doing in the “Histio support plan for families”, which we carry out to cover the emotional needs of parents and of children fighting any type of Histiocitosys.
Our purpose, wherever it is, is to pursue and promote knowledge about Histiocytosis. We do this with as we belive that we can improve the quality of life of patients and their families, therfore we get in contact with the best specialists in our disease, all around the world.
Fernando Gotz Cart, President of the OR Association.
Scientific studies focused on the role and needs of patient´s caregiver.
Dr. Diamond is conducting studies related to “the role, burden and needs of caregivers of a patient with a rare disease such as Histiocytosis or affected by Erdwin Chester disease” (ECD disease is a like cousin brother of Histiocytosis, to read more about it click here:)
Recently, Dr. Diamond has published this pilot study: An investigation that is focused on the experiences experienced by informal caregivers of patients with rare cancers. https://www.tandfonline.com/…/full/10…/10428194.2020.1719090.
From OR Asociación we are very interested in this study and we are studying how we can provide information and data for this study or to try to collaborate with his studies in multiple ways.
Extensive experience in the field of scientific research on Neuro-Histiocytosis.
Also note that Dr. Diamond is a member of the Medical and Scientific Advisory Committee of the Histiocytosis Association. In 2016 the American Association of Histiocytosis funded Dr. Diamond with another of his investigations: A study focused on advanced neuroimaging and cognitive status in adults with histiocytic disorders.
The purpose of that research study: is to understand more about how histiocytosis affects the brain. There are severe and advanced forms of histiocytic disease (Langerhans and others) in the brain that are life-threatening and very difficult to treat. It is not understood what causes this, and this is part of the reason why effective treatments are lacking. Furthermore, our experience is that many patients, young and old, with histiocytosis have trouble thinking, remembering, or walking, but the scans may be unrevealing and no explanation ca
OR Asociación’s intentions are clear: we continue to seek and fund competitive studies around Histiocitosis.
From OR Asociación we continue to emphatically seek solutions for affected children today, but we are also concerned with their future, that is why we will support studies by specialists in the field of Histiocytosis, wherever necessary.
We have started in 2014, when we launched and funded the first study done around Histiocitosys, focusing on the BRAFV600E detection and the early detection and treatment of the Neuro Degenerative desiease. This study continue until these days and the research is led by Dr. Jaume Mora Graupera and it´s carried by Sant Joan de Deú Hospital in Barcelona, Spain.
This year, 2020, we have also started to fund another innovative research: Immunological study of pediatric patients with Langerhans Cell Histiocytosis, this research is carried and led by Dr. Guillermo Chantada at Garrahan Hospital in Buenos Aires, Argentina.
Nothing will stop us from investigating and seek for better treatments!
We have agreed with Dr. Diamond that we will continue to explore ways of collaboration to try to carry out collaborative studies with patients here and there.
OR Association, Barcelona, June 10th 2020