Gaucher Community News - National Gaucher Foundation
Gaucher Community News - National Gaucher Foundation
Gaucher Community News - National Gaucher Foundation
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About <strong>Gaucher</strong> <strong>Community</strong> <strong>News</strong><br />
Animated by Daryl Slaton<br />
daryl@octoberrocket.com<br />
Resources for treatment of<br />
<strong>Gaucher</strong> disease<br />
Below is a list of companies that have treatments,<br />
treatment protocols and clinical trials available.<br />
This newsletter attempts to report all items of<br />
interest relating to <strong>Gaucher</strong> disease. The NGF<br />
will not willingly reproduce inaccurate or libelous<br />
material. Information related to treatments,<br />
(current or potential), therapy, research, trials<br />
or studies that are featured in this newsletter<br />
should be discussed with an individual’s<br />
physician. All articles related to research, trials<br />
and studies are submitted for publication by<br />
the entity/organization named in those articles,<br />
and the NGF shall not be held liable for content<br />
therein. The editor reserves the right to reject an<br />
article, make corrections as are appropriate and<br />
in accordance with established editorial practice<br />
in material submitted for publication.<br />
Actelion<br />
Treatment: Zavesca(R)<br />
Website: www.actelion.com<br />
Genzyme Therapeutics<br />
Treatment: Cerezyme(R) (imiglucerase for injection)<br />
Clinical Trials: Eliglustat tartrate<br />
Websites:<br />
www.cerezyme.com<br />
www.expressionofhope.com<br />
www.genzyme.com<br />
http://supplyupdate.genzyme.com/weblog/<br />
Protalix Biotherapeutics<br />
Clinical Trial: prGCD<br />
Websites:<br />
www.protalix.com<br />
http://www.protalix.com/Patients/ProtalixPatientsCare.html<br />
Shire Human Genetic Therapies<br />
Treatment: VPRIV<br />
Websites:<br />
www.bravecommunity.com<br />
www.gaucherpatients.com<br />
www.onepath.com<br />
www.shire.com<br />
For updates on <strong>Gaucher</strong> disease clinical trials in which the<br />
above companies are involved, go to www.clinicaltrials.gov.<br />
Interested in becoming a volunteer<br />
to promote awareness of <strong>Gaucher</strong> disease<br />
• Help with events such as 5K walks, golf<br />
tournaments and NGF’s online auction.<br />
• Organize an awareness and fundraising event<br />
in your community.<br />
• Distribute <strong>Gaucher</strong> flyers/brochures to<br />
community and religious leaders, friends,<br />
family, physicians and local Hillels and other<br />
college organizations.<br />
• Distribute posters and brochures at stores and shops<br />
with whom you do business.<br />
• Send out informational emails to friends, family<br />
and associates.<br />
• Hold a garage or bake sale in your<br />
neighborhood.<br />
• Share your experiences with <strong>Gaucher</strong><br />
disease in the health sections of your<br />
local news group.<br />
Contact the <strong>National</strong> <strong>Gaucher</strong> <strong>Foundation</strong> to see how<br />
you can help promote education and<br />
awareness of <strong>Gaucher</strong> disease.<br />
800-504-3189 or email ngf@gaucherdisease.org.<br />
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