This is a call to sign and save research data that may disappear and not be used for any purposes, which could impact not only current patients, but others who may be affected by this research. We as cancer patients are aware of the value of other research suddenly being valuable to us. Having been diagnosed with a potentially fatal aneurysm (all OK now), I jumped at the chance to help. Please do sign onto this petition. The link is below.
After 10 years of gathering data and tissue samples, this ongoing study has been canceled. All the work will simply be lost. The study is the major hope for people with potentially deadly connective tissue syndromes including fibromuscular dysplasia, Ehlers-Danlos syndrome, aneurysms, Marfans, and Stickler syndrome. We have communities at Smart Patients for FMD and EDS, but they don’t have enough people to carry this petition. Only a few hundred more signatures are needed. Help keep hope alive. Please sign the petition. Please share this petition with your own community and your friends elsewhere, just as been done at my favorite site, https://www.smartpatients.com