06/17/2024
If you have a confirmed epilepsy diagnosis and you are receiving treatment, you are one of the lucky ones! Far too many patients are suffering from seizures as part of their RARE genetic condition, yet there are few research programs and even less treatment options. A few years back, with help from the LGS and Dravet foundations, we added a RARE genetic arena to the EXPO. That group has grown to over 50 foundations and new therapies are in the works.I ASK YOU ALL NOW, TODAY, TAKE A STAND! WE NEED EVERY CALIFORNIA RESIDENT TO SIGN THIS PETITION to push for more funding for research for RARE disease!If you have a confirmed epilepsy diagnosis and you are receiving treatment, you are one of the lucky ones!
Far too many patients are suffering from seizures as part of their RARE genetic condition, yet there are few research programs and even less treatment options. A few years back, with help from the LGS and Dravet foundations, we added a RARE genetic arena to the EXPO. That group has grown to over 50 foundations and new therapies are in the works.
Please co-sign the letter below to CIRM (California Institute of Regenerative Medicine) to continue to allocate at least 50 percent of its funding to clinical research into rare diseases by June 25th. If you have any questions or inquiries, please email cal4rare@gmail.com. Thank you for your interes...