Latest News

Now Available – After AZEDRA: Moving Forward Together

The information presented on this webinar is for educational purposes only and should not substitute the advice of your doctor(s) and medical team because they have in depth knowledge of your medical history and current situation.

Questions and timing are below.

Q 1 at 06:44 What happens now that Azedra is no longer available?

Q 2 at 11:07 Is Azedra no longer available to new patients? Will patients who started Azedra treatment be able to complete their treatment?

Q 3 at 11:49 Why are they stopping production of Azedra?

Q 4 at 16:43 Is there anything we can do – grassroots campaign, for example – to stop or delay the cessation?

Q 5 at 23:22 Is something better than Azedra coming soon? I have a vagal paraganglioma that is avid to Gallium DOTATATE. Targeted chemotherapy would suit me but what options will I have when Azedra has gone?

Q 6 at 25:44 Is Lutathera as effective for people who responded well to AZEDRA?

Q 7 at 25:53 How might side effects from treatments like Lutathera (PRRT) differ from those associated with AZEDRA?

Q 8 at 31:38 Can I be treated with Lutathera (PRRT) if I was treated with AZEDRA? If yes, are there any caveats?

Q 9 at 34:12 What clinical trials are currently available? Is the Belzutifan trial still open?

Q 10 at 41:54 Are there any SDHB specific treatments that have shown to be effective in the treatment of paragangliomas?

Q 11 at 43:22 I have received 500 millicurie of Azedra with partially positive results. My doctors recommended another dose of 300 millicurie but I don’t feel very safe.

Q 12 at 45:07 My insurance covered AZEDRA. Will it cover a different therapy? What can I do if it doesn’t?

Q 13 at 48:37 Can any of the doctors take a moment to discuss the out-of-pocket cost of AZEDRA and Lutathera?

Q 14 at 50:57 Are variations of unknown significance (VUS) included in the Beltutifan trial?

Q 15 at 51:32 Are there any clinical trials directed at methylation?

Q 16 at 53:53 What is the role of lower doses of MIBG?