Other Resources — The Stop ALD Foundation

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sqs-col-12 span-12"><div class="sqs-block html-block sqs-block-html" data-block-type="2" data-border-radii="{"topLeft":{"unit":"px","value":0.0},"topRight":{"unit":"px","value":0.0},"bottomLeft":{"unit":"px","value":0.0},"bottomRight":{"unit":"px","value":0.0}}" id="block-ed61e1f27e1db12573bb"><div class="sqs-block-content"> <div class="sqs-html-content"> <p class="" style="white-space:pre-wrap;">By including the links below, The Stop ALD Foundation does not necessarily endorse any of the organizations listed; nor do we vouch for the accuracy of the information contained on their respective web sites.</p><h2 style="white-space:pre-wrap;">Sites that Discuss Adrenoleukodystrophy</h2><ul data-rte-list="default"><li><p class="" style="white-space:pre-wrap;"><a href="http://aldconnect.org" target="_blank">ALD Connect</a></p></li><li><p class="" style="white-space:pre-wrap;"><a href="http://www.aldfoundation.org/" target="_blank">The ALD Foundation</a></p></li><li><p class="" style="white-space:pre-wrap;"><a href="http://www.aldlife.org/" target="_blank">ALD Life</a></p></li><li><p class="" style="white-space:pre-wrap;"><a href="https://www.leukodystrophyforum.com/" target="_blank">Leukodystrophy Family Forum</a></p></li><li><p class="" style="white-space:pre-wrap;"><a href="https://www.navigatingald.com/" target="_blank">Navigating ALD (by bluebird bio)</a></p></li><li><p class="" style="white-space:pre-wrap;"><a href="http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=43" target="_blank">Orpha.Net -- European Rare Diseases Organization and Their Discussion on ALD and many great links & resources</a></p></li><li><p class="" style="white-space:pre-wrap;"><a href="http://www.ulf.org/" target="_blank">The United Leukodystrophy Foundation</a></p></li><li><p class="" style="white-space:pre-wrap;"><a href="https://clinicaltrials.gov/ct2/results?city=&cntry=&cond=Adrenoleukodystrophy&dist=&state=&term=" target="_blank">US ClinTrial.gov -- Listing of ongoing US ALD clinical trials</a></p></li><li><p class="" style="white-space:pre-wrap;"><a href="http://en.wikipedia.org/wiki/Adrenoleukodystrophy" target="_blank">WikiPedia on ALD</a></p></li><li><p class="" style="white-space:pre-wrap;"><a href="https://www.itmightbeald.com/" target="_blank">ItMightBeALD.com</a> - Disease education site developed and hosted by bluebird bio, Inc</p></li></ul><h2 style="white-space:pre-wrap;">For Physicians, Scientists & Healthcare Workers</h2><ul data-rte-list="default"><li><p class="" style="white-space:pre-wrap;"><a href="/s/MediView-Report-on-ALD-2004-FINAL.pdf" target="_blank">Avoiding the Misdiagnosis of Adrenoleukodystrophy: Distinguishing ALD from ADD/ADHD</a></p></li></ul><h2 style="white-space:pre-wrap;">Stem Cell (Cord Blood / Bone Marrow) Transplants Resources </h2><ul data-rte-list="default"><li><p class="" style="white-space:pre-wrap;"><a href="https://www.bmtinfonet.org" target="_blank">The Blood and Marrow Transplant Information Network</a></p></li><li><p class="" style="white-space:pre-wrap;"><a href="https://wmda.info" target="_blank">Bone Marrow Donors Worldwide</a></p></li><li><p class="" style="white-space:pre-wrap;"><a href="https://pediatrics.duke.edu/divisions/transplant-and-cellular-therapy" target="_blank">Duke University's Pediatric Stem Cell Transplant Program</a></p></li><li><p class="" style="white-space:pre-wrap;"><a href="https://bethematch.org" target="_blank">National Marrow Donor Program</a></p></li><li><p class="" style="white-space:pre-wrap;"><a href="https://www.fairview.org/locations/university-of-minnesota-medical-center-east-bank-hospital" target="_blank">University of Minnesota: Fairview University</a></p></li><li><p class="" style="white-space:pre-wrap;"><a href="http://cordbloodbanking.com" target="_blank">The Cord Blood Banking Center</a> - A service to help expecting mothers donate their cord blood or bank for their own purposes.</p></li></ul><h2 style="white-space:pre-wrap;">Leading Research Organizations</h2><ul data-rte-list="default"><li><p class="" style="white-space:pre-wrap;"><a href="https://www.institutcochin.fr/institute" target="_blank">Cochin Institute of Molecular Genetics (France)</a></p></li><li><p class="" style="white-space:pre-wrap;"><a href="https://www.kennedykrieger.org" target="_blank">Kennedy-Krieger Institute</a></p></li><li><p class="" style="white-space:pre-wrap;"><a href="https://www.amc.nl/web/research-75/departments/adrenoleukodystrophy.htm">The X-ALD Group at the Academic Medical Center (AMC)</a></p></li></ul><h2 style="white-space:pre-wrap;">OTHER</h2><ul data-rte-list="default"><li><p class="" style="white-space:pre-wrap;"><a href="http://globalgenes.org/toolkits/" target="_blank">RARE Toolkits. </a>RARE Toolkits provide individuals with usable information on a variety of topics related to living with and/or advocating for rare disease patients.</p></li></ul> </div> </div></div></div></div></div> 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