Last Friday we had a great meeting bringing together MCOPS12 Patients and their Families with Prof. Krezel from IGBMC in Strasbourg and Prof. Michaud CHU Sainte-Justine Research Center in Montreal that we are currently collaborating with on a #drugrepurposing study and investigation of disease mechanisms associated with #MCOPS12 to discuss preliminary results and progress!
Additionally, we discussed our next steps with the #NaturalHistoryStudy, highlighting the importance of conducting this study as there is simply not enough information about MCOPS12 and this can be useful in the creation of diagnostic criteria for others out there who may have MCOPS12 and don’t know it, helpful for patients and their families, and for future #drugdevelopment!
We are actively #fundraising for this Natural History Study and it’s not too late to support us in this effort!
To Donate: https://www.gofundme.com/f/seeking-a-cure-for-simon
Please continue to Share with your family, friends, colleagues, and within your communities so we can reach our goal to fund this!
#rarediseases #research #collaborations #patientfamilies