Leading the Fight to treatand cure Tay-Sachs, Canavan and related diseases
GOALS• Families have the tools and resources to evaluate experimental therapies • Families feel supported in all care choices• Families feel empowered to make informed choices they can feel good about
ClinicalTrials.gov ClinicalTrials.gov offers up-to-date information for locating federally and privately supported clinical trials. Only clinical trials that meet the site's rigorous scientific standards are listed. PubMedPubMed provides free online searchs of peer reviewed original scientific papers. Publishing work is an important part of the scientific process. It allows scientific peers to review the work and critique the approach. It is a concern when data is not published. Please contact the office at 1-800-906-8723 or
if you are interested in any particular paper. We are often able to access the full paper, and members of our Scientific Advisory Committee can provide insights into the quality of the paper, what the paper means in lay language and address the reputation of the publishing journal.Ask the ExpertsNTSAD is able to connect you directly with leading experts to provide their perspective. These world-class scientists will give you their expert, unbiased opinion on an experimental therapy so you are able to make the decision that is right for you and your family. QuackWatchQuackWatch is an international network of people concerned about health-related frauds, myths, fads, fallacies, and misconduct. Search the website for information on the experimental therapy you are considering.
Where is therapy offered?A US doctor providing therapy outside the US bypasses the FDA’s standards of safety and efficacy which are in place to protect patients. If the team offering the experimental therapy is so confident in their approach why bypass the FDA? Also ask who pays if there is a medical emergency while out of the country. Is it IRB approved? An Internal Review Board is an independent team of scientists and lay people who evaluate whether the potential benefits outweigh the potential risks. How much does the experimental therapy cost?Typically, there is little to no cost to participate in clinical trials that are IRB approved, and listed on ClinicalTrials.gov . POTENTIAL RED FLAGS
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At NTSAD, we are making a difference. Every day. Helping families and individuals find their way and providing hope by supporting research on many levels. All of this takes compassion and determination.
There is no time to waste, and families need our help. Those who are fighting today and those who will seek our help tomorrow.
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