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Thalassemia Patients and Friends and thalpal © A. Battaglia 2018





54566 Posts in 5767 Topics by 5953 Members
Latest Member: Trangvn

This is Thalassemia Patients and Friends,
dedicated to its founder,
Lisa Cammilleri.
(1970-2004)
Pages: 1 2 3 4 5 6 7 8 9 10
 1 
 on: May 19, 2018, 12:51:40 PM 
Started by Sunny2701 - Last post by Sunny2701
bluebird bio, Inc. (Nasdaq: BLUE) announced that data from ongoing LentiGlobin clinical studies in transfusion-dependent β-thalassemia (TDT) and severe sickle cell disease (SCD) will be highlighted in oral presentations at the 23rd Congress of the European Hematology Association (EHA).

“As we progress towards our European regulatory filing for LentiGlobin in TDT later this year, we look forward to sharing the updated data from our Phase 3 HGB-207 study of LentiGlobin in people with TDT,” said David Davidson, chief medical officer, bluebird bio. “In addition, we are pleased to be able to share new data from our HGB-206 study of LentiGlobin in people with SCD, which will include data from patients treated under our updated study protocol using plerixafor mobilization of hematopoietic stem cells, and with LentiGlobin gene therapy manufactured using the refined process.”

Oral PresentationsLentiGlobin Gene Therapy for Transfusion-Dependent β-Thalassemia (TDT) in Patients with Non-β0/β0 Genotypes: Updated Results from Northstar-2 (Abstract S833)

Presenter: Franco Locatelli, M.D., Ospedale Pediatrico Bambino Gesù, Rome, Italy

Date & Time: Saturday, June 16, 11:45 a.m. CEST (5:45 a.m. EST)Location: Room A8

Let hope for great results

 2 
 on: May 17, 2018, 12:24:13 AM 
Started by Sdewan - Last post by Mubeen
Dear Andy please suggest any Doctor in Pakistan (Lahore) for the same problem of my son age two year

 3 
 on: May 16, 2018, 04:06:42 PM 
Started by BitterBlood79 - Last post by chickadee777
Thanks Andy! I tried to get referred to a hematologist as my primary care only did a ferritin test - I asked her for a full iron panel, she said no. So I will try to get an iron pal and figure out what's going on.

Thank you so much!

 4 
 on: May 16, 2018, 04:05:19 PM 
Started by chickadee777 - Last post by chickadee777
Wow - thank you Andy! I'm going to try milk thistle- great news.

 5 
 on: May 16, 2018, 01:42:27 PM 
Started by Daguirre916 - Last post by Querier
I’m new to this site and I haven’t posted before but I’ve done a lot of reading. I had gastric bypass surgery in 1995. I have to get iron infusions due to the absorption issues after the surgery. I get my iron checked every 6 months but I go for 2-3 years between infusions. Good luck with your surgery.

 6 
 on: May 15, 2018, 07:03:36 PM 
Started by CrazyPharm - Last post by Andy
Only comments from patients in the trials. Some are doing very well. I don't anticipate any official findings until trials conclude.

 7 
 on: May 15, 2018, 03:41:28 PM 
Started by anisha - Last post by anisha
Thankyou so much Andy for taking time and sharing your knowledge. I will check if I can find methylfolate over the counter otherwise have to ask my Dr. for prescription.

 8 
 on: May 15, 2018, 12:05:39 PM 
Started by CrazyPharm - Last post by anshul
Is there any update on luspatercept trials?

 9 
 on: May 14, 2018, 09:06:52 PM 
Started by anisha - Last post by Andy
The decrease in Hb has been marginal and probably relates more to the added fluid volume from pregnancy diluting the Hb test that it does to the Hb dropping. This will usually level off and increase again a bit as the pregnancy goes on. If the Hb is this low at birth, they should be prepared to give you a blood transfusion if needed. If you can find L-methylfolate, you may see better results than you do with folic acid.

 10 
 on: May 14, 2018, 09:03:18 PM 
Started by Sdewan - Last post by Andy
You are thal intermedia and unless you can raise your hemoglobin level, you will need transfusion. Since you are in India, I would suggest you contact Dr Vijay Ramanan and ask about his novel therapy, which is yielding good results in many people similar to yourself. In addition to raising the Hb so patients don't have to transfuse, his therapy is showing good results in patient growth, as well. Go to this link to find contact information, https://www.vijayramanan.com/

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