also, if and when you go to the NIH, there is a shuttle bus that will take you the 3-4 blocks to the clinic from the Children's Inn any time of the day....door to door
Camille Lieffers
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Hi Karen, Thanks for you email and welcome to the group. The person to contact is Janet Jones (Nurse specialist- Research) Tel# 301-594-8773 9000 Rockville...
also, if and when you go to the NIH, there is a shuttle bus that will take you the 3-4 blocks to the clinic from the Children's Inn any time of the day....door...
Could someone tell me where to send Erikas photo? I need web addy. Oh by the way we were at the open house new addition at The Childresn Inn. It is beautiful....
Hi, to all! My 10 year old daughter was diagnosed with NOMID in Oct. She is being seen at UCSF CA. One of her doctors just mentioned the idea of us going to...
Hello Melissa We asked the NIH that if we agree to take part in the research that they would look at Tilly's overall picture, to which they agreed as CINCA is...
Sorry I forgot to mention that the NIH have found so much in 2 visits that the UK have missed for several years: Collapsed vertabre in places where bones have...
It appears that Isaac and I will be there the week of the 7th.? Isaac is 4.5 yrs old and we have been going to the NIH for 2.5+ years.? He is PFS unknown, poss...
Hello All, Back to the NIH with Quinn the week of March 9th, Anyone else? Plans for "A walk In the Park " fundraiser for NOMID Alliance are in full swing. I am...
Colleen, We are just at the NIH this week and will go home tomorrow, so we jsut missed seeing you by a few weeks! I cannot get onto facebook here at †he...
Isaac and I will be there March 11 -? March 17.? We are going to try Orencia with Isaac.? Every other med has failed so far. Kathe Isaac 4.75 yrs? PFS unknown...
Which one is that Kathe. ... From: nomidsyndrome@yahoogroups.com [mailto:nomidsyndrome@yahoogroups.com] On Behalf Of kathebarch@... Sent: Friday, February...
Hi Michelle, Hope all is well with you and yours.? I wish we could have had more time together last visit.? Isaac sure love Kieren! I believe, if I remember...
Kathe, I will keep you in our thoughts and prayers, and hope you get a drug that helps instead of the other option. So sorry to hear that even being...
Karen, Thanks for the note.? We have actually already corresponded with this family just over the weekend.? She has sent me pictures and they do look very...
Kathe, I am so glad that you have gotten connected over the weekend! I was not able to get onto facebook at the Inn and that is how we had met this family so...
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