Autoinflammatory Interferonopathies: CANDLE and SAVI

[@jenniferskapriwsky4577]

My daughter has been diagnosed this year with Savi. So many unknowns still.

[@raffaellacancelli5417]

hi, how are you? My son too, we had the diagnosis just a few days ago. Good luck, hope they found how to give them a good life.

[@jenniferskapriwsky4577]

We are working with NIH now. I highly recommend reaching out to them. The doctor that is actually speaking right now we’ve met with and they are just amazing.

[@raffaellacancelli5417]

@@jenniferskapriwsky4577 thanks for your answer. We live in France, but i sure can try to reach them. At what point of the quest are you? Any news ? 🌹

[@jenniferskapriwsky4577]

We just started new medication that is showing great progress for Savi patients. The drs out here didn’t know how to or what to give her so she was on meds that helped other issues. We didn’t find out until 4/2022 after a few years of trying to find answers as to what was wrong with her.

[@jenniferskapriwsky4577]

I met a family from Ukraine that was starting treatment for Savi.