Sickle Cell Warriors, we often hear complaints that there is not enough being done for Sickle Cell Disease. I’m extremely disappointed to find out that out of over 100,000 people with SCD in the US and millions abroad, only a few have completed this survey. How can we expect others to help us if we don’t help ourselves?
Modus Therapeutics is doing things differently. Instead of creating a clinical trial and asking for patient input AFTER the fact, they are reaching out to us in the beginning. This is what we have always wanted, and yet, this chance is being wasted. Please take a few minutes to answer this survey. I found it extremely insightful, and you can tell that they are focused on understanding our experience and perspectives on living with sickle cell disease.
They have promised to share the results of the survey with us, and that your info will be protected. In fact, they do not collect any identifying information. So please give them a hand, so they can give us a hand. This might be the cure we have all been waiting for.
Visit www.modustxpatientsurvey.com and take a survey created by patients in partnership with Modus Therapeutics. Your responses are anonymous and will shape an upcoming clinical trial with a new potential treatment for Sickle Cell Disease
Share the link with your friends and family affected by sickle cell. The more people respond, the more impact we will have in the long term.