G6PD Deficiency Association - Home

Time 2021-05-11 23:17:49

Web Name: G6PD Deficiency Association - Home

WebSite: http://www.g6pd.org

ID:175949

Keywords:

Deficiency,G6PD,Home,

Description:

Created by Associazione Italiana Favismo Deficit di G6PD onlus now administered by volunteers About us Dear users,unfortunately theG6PD Deficiency Association, active since 2001, has to close its activities as association, but it leaves for free its website and mobile application for searching safe and unsafe drugs and trade names for people withG6PD deficiency. The webiste www.g6pd.org has been created by Chanan Zass initially only in english in the 1996, to reach the 400 million people affected by G6PD deficiency all around the world. Later, we also added one version in Italian; In Italy there are about 400.000 people affected by G6PD deficiency. The website keeps researched and articles about the deficit, including some work, also unpublished, kindly made available by the most expert members of the international medical research and scientific community about the G6PD deficiency, who have been keeping us posted about the last publications and the ongoing researches. Among the ones that have supported us during these years, we want to mention: the lateProf. Ernest Beutler, that back at the time was atScripps Research Institute,La Jolla, California, considered an historical leader about the G6PD researches; Professor Lucio Luzzato, the first one to isolate the gene of the G6PD deficiency and to run researches about the gene therapy of the deficit; Professor Paolo Ninfali, who run studies about the variances of the deficit (there are about 400 of them) and about G6DP deficiency and sport; Professor Tullio Meloni, the Italian pediatrician with most experience with the G6DP deficiency. Recently, we added articles about Covid 19. We created a database that includes drugs and trade names to be avoided by people affected by G6PD deficiency in collaboration with the Centre for rare diseases of Padua represented by Professor Facchin, Director of the department and the registry of rare diseases of Padua, and based on data from the Italian "Istituto Superiorie diSanit ". Later, we created a mobile application to make it easy to find drugs and trade names. We have also prepared, with their permission, a list of accredited medical centers that deal with G6PD deficiency. All this has been so far managed non-profit by the Association. From now on it will be managed by me, who I have been the president of the association. In the website there are also some researches, otherwise not available for many users, from the"Istituto Superiorie diSanit " that kindly allowed the reproduction. We have done our the best to assist people affected by the G6PD deficiency and their family members, safeguard their civil rights and sharing knowledge about the G6PD deficiency (considered a "rare disease" till few years ago). Inside the website you will find our brochure that summarizes dangers and peculiarities of the deficiency, with an overview of drugs to avoid and to take with caution. The brochure is in two version, in italian for distribution inside schools, pharmacies and hospitals, and in english, for those abroad. This brochure has been translated in different languages and used by some European institution, like the Swedish minister of healthcare. Michela A. Calderaro and Chanan Zass G6PD DEFICIENCY and CORONAVIRUS (COVID-19) The Novel Coronavirus poses new challenges to G6PD deficient persons. Medications that are being experimented with and, in some places, used might be of great risk to G6PD deficients. In this section we list recent related studies of Coronavirus drugs, some of them are of great risk, others have not been tested yet. Learn more... Activities of the associationOver the years the association has offered assistance to persons affected by the G6PD enzyme deficiency and their families, including informing and educating affected persons and the medical community on all aspects of the deficiency; helping organizepetitions calling for government actions; and more. Among the resources that were offered by the association are lists ofcontraindicated drugs (including some trade-names); an online forum (viewing only);mailing lists (now closed).The site, the list of drugs and list of medical centers are still offered thanks to the work of volunteers. Brochure View or print this quick reference handout, including answers to frequently asked questions, lists of drugs and foodstuff to avoid or that are safe to take, and more. [For paying members only.] Web Links Links to additional sources of information available online. The list is updated often. Visitors' suggestions are welcomed. Neonates A must-read for new parents. Learn of common risks and what to watch out for in the most delicate moment in the life of a G6PD deficient baby. Even if newborn screening for G6PD deficiency is performed in your hospital, you should still read this. Medical centers Italy List of health care providers and test labs near you: check your enzyme level and diagnose your G6PD deficiency. Find out where you can determine your deficiency variant and enzyme level. High- and Low-Risk Drugs List of drugs and foodstuff that should be avoided or taken with caution by G6PD deficient patients, along with their risk levels. Reaction to these drugs vary according to variant and other conditions, such as fatigue, stress level, altitude, etc. Please consult with your pediatrician or physician before taking any of these. Articles Research Papers A collection of research papers, including fundamental articles by such world experts in the field as the late Ernest Beutler M.D. and Prof. Lucio Luzzatto; must-read articles about neonatal jaundice and kernicterus; papers on muscular problems caused by exercise; and more. G6PD Deficiency and Glaucoma Dorzolamide (trade name, Trusopt), Brinzolamide (Azopt) and Acetazolamide (Diamox pills) are contraindicated for persons suffering from G6PD deficiency. Winter Pledge Drive Concluded Our winter pledge drive concluded on March 31st.We thank all of the gracious friends of the G6PD Deficiency Association who have offered their donations and helped us to help the millions around the world who suffer from this condition. Winter 2012-13 Pledge Campaign The G6PD Deficiency Association announces the start of its Winter 2012-13 Pledge Campaign. Genetic link between G6PD Deficiency and Incontinentia Pigmenti A newly discovered genetic link between two different conditions, G6PD deficiency and Incontinentia Pigmenti was reported in the Human Molecular Genetics Oxford Journal. Created and offered by the G6PD Deficiency Association free of charge in 2015, is now administered by volunteers. Search drug names and trade names that should be avoided by G6PD deficient subjects. Covers most countries. Learn more...

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The first Web site established to offer information for G6PD deficient persons. Established in 1995 with the help of the late Ernest Beutler M.D. and the active support of Lucio Luzzatto M.D. Includes official list of drugs to avoid along with trade-names, printable brochure, forum and mailing lists. In both Italian and English.

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