Where are the best NF doctors in the US?

I am getting ready to start searching for a job so I will have one when I graduate next year May. I am looking at moving away from Missouri and one of the deciding factors is that where I end up needs to have some of the best NF doctors in the area, especially for children. So, where would you say some of the best NF doctors in the US are?

Edited October 9, 2011 at 10:53 am

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It's a hard choose as I said before I trust the Cleveland Clinic . Housing is affordable. What do you do for a living ?. Jobs are hard to find right now but things are looking up with medical ,mart and the casino coming in

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Oh and Dr. Slopis isn't on the site that lists Drs. I wouldn't go by that site it's better to talk to others and get the opinions of real people.

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1girln3boys-that is why I am asking, I took my son to a neurologist on one of the lists. I did not like his bedside manners, I have since then switched to one not on the list. This new one is wonderful, but like I said in an earlier post, he is only a nuerologist and my children will be hitting puberty soon. We all know what that means. I don't care about lists, I want to know what others have to say about doctors.

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Cathapath-my options for a job should be many. As of right now, I have an AS in Accounting and Business Management. Next May I wll have 2 BS in Business Administration; one emphasis in Finance & Banking and another emphasis in Real Estate. I am taking a federal taxation class right now to back up my associates and am looking forward to getting my substitute teaching certificate focusing on subbing in finance, accounting and all types of math classes in middle schools or junior/senior high schools.

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Contact CTF
http://www.ctf.org/

Email them and they are excellent at getting back to you quickly. They can tell you who the very best are.

CHOP - Children's Hospital of Philadelphia is one of the best in the country. We moved to be close to that hospital for my son.
http://www.chop.edu/

Check this out - the top children's hospitals in the US. CHOP ranks extremely well.
http://health.usnews.com/best-hospitals/pediatric-rankings

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Does anyone see Dr. Roger Packer at the Childrens National Medical Center in Washington DC? He was recommeded to us and we will travel from KY for my 11 year old son to see him next week.

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My son goes to Children's in Dallas, TX (I think you have to be referred however) and for adults I was told there was a good specialist in Houston, TX.

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Hi Mizzou;
Can you give us an idea of which cities you are considering?

I know that Dr. Tonsgard in Chicago is highly regarded and loved by his patients. We live in KC. My husband is traveling to Washington University in St. Louis. He likely has Schwannomatosis, and has seen Dr. Chicoine and Dr. Huller there, and will see Dr. Gutmann in January. Dr. Gutmann runs their NF clinic. My husband really liked Dr. Chicoine, but he specializes in NF2, I believe. May we assume your child has NF1?

All the best to you,
Catherine

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For Adults the best docs that actively treat NF are

Mayo Clinic in Rochester Minnesota.
http://www.mayoclinic.org/neurofibromatosis/?mc_id=comlinkpilot&placement=b ottom
Mayo Clinic in Rochester, Minn., is ranked among the Best Hospitals for neurology and neurosurgery by U.S. News & World Report. Mayo Clinic also ranks among the Best Children's Hospitals in neurology and neurosurgery.


John Hopkins
http://www.hopkinsmedicine.org/neurology_neurosurgery/conditions_main/old/n eurofibromatosis.html
Johns Hopkins Hospital has earned the top spot in US News News & World Report's annual rankings of American hospitals

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I am in Akron, near the Cleveland Clinic. In fact, I have been under their care for the last seven years but closer to you is Pittsburgh. My neurosurgeon mentioned the hospitals their are skilled with NF. Sorry, dont know which one(s).

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Yes, jobs are hard to find, I have my own Property and Management Company, work is even hard to find, not to mention getting paid is the biggest problem, and worst of all after you give a price for a job and they say yes, once you start and toward the end of the job the customer comes outside and wants more work done for the same price

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Well it appears you've had a lot of replies....and everyone's opinion is different. Personally...I would say the best in the US is Bruce Korf, who runs the Human Genetics program at the University of Alabama, Birmingham. He writes much of the NF literature and runs many of the clinical trials and is a brilliant Doctor. We were fortunate to have him as our Neuro back when he was in Boston.

We're JUST as pleased with our current Neuro-Oncologist, Dr. Ullrich and team at Children's Boston and Dana-Farber. They've saved my daughter's life on more than one occasion and I'm forever grateful. I think there are many suitable doctors out there...so long as you see someone very well-versed in NF. We really love Dr. Ullrich and Dr. Anderson in Boston though...I can't say enough about how amazing they are.

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Wifeofjohnny-Yes both of my children have NF1 and so do I. I am trying to get into Wash U, but that is hard to do without insurance. I am waiting on a decision on my financial aid request. I really don't want to work in St. Louis as I hate the traffic there and I am scared to drive in parts of that town.

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My daughter sees Dr. Tonsgard from University of Chicago. We have been going to him for 9 years, and he has been great! I feel like she is in fantastic hands!

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Chicago IL- DR Tonggard http://www.uchospitals.edu/physicians/james-tonsgard.html. He works with a series of people who know NF well he sent me to his eye doctor who knows NF well Dr Kipp in the burbs of the city and a few plastic surgeons who know NF and fibromas well.

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We have had an AMAZING experience with Duke's NF clinic in the Raliegh-Durham area of N. Carolina. It's 4 hours from the Atlantic coast, so you could live on the beach like us and drive. It's also only 4 hours from Asheville, NC which is GORGEOUS! The clinic has been so great for my 5 year old. He had numerous procedures last year, and after our experience I'm sure we will be sticking with Duke for life!!

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I am thrilled that there are so many NF doctors out there, and so many great NF docs. Just 20 years ago, There were a lot of docs that weren't sure what NF was.

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@ Mizzou...Dr. Post is at Mount Sinai Hospital. He is world-renowned. Saved my life many, many times.

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Hi
I live in Michigan. My kids are seen at Childrens and I go to U of M. There is a GREAT clinic called DEVOS in Grand rapids. However my brother, (who works for a major pharmaceutical company )swears by Cleveland Clinic in OH. Clev Clinic is just too far of a drive.

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I agree with Cami77 ... I love Cincinnati Children's hospital.b.tw you don't have to be a kid to go there. Dr Hummel is our hem/onc doc and he is fantastic. Certain NF clinic are better with NF1 than NF2, Chicago, Cincinnati, Cleveland clinic, and Texas too. On east coat John Hopkins and in California there is the House institue. Where ever you end up ... just ask the docs how many NF1 and/or NF2 they have seen. Like Cami I live in Indiana. We have an NF clinic here but they lack when it comes to NF2, they are alledgely good with NF1 tho'. Remeber tho' Neurosurgeons usually have horrible bedside manners ... haha .. nonexsistence in some instances but keep up with the NIH studies and you should be able to stay updated on new treatments. Facebook has The NF2 Crew and other NF networking sites. I've found them helpful going thru the maze of all shock of the diagnosis.

good luck

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