Wegeners Granulomatosis / GPA specialists

I was going to set up a website/directory that would be a source of WG/GPA specialists. That's not going to happen any time soon so we'll use this thread to start to create the data that may eventually get used in the directory.

So here's what I reckon. Copy/paste the template below and fill in the detail and post in this thread. This can be a source of information for all and I'll make the thread a 'sticky' and link to it from the front page.

Note: this is information that you would normally respond with to a question regarding "what specialists are in my area" or something similar.

NOTE: No contact information should be published at this stage. People can Google name and location.

Go...

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Specialist name:
Location (Country/State/City):
Area of specialisation (e.g. Rheumy, Immunologist etc):

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Alexandra Villa Forte, MD
Cleveland, Ohio, United States
Rheumatologist specializing in vasculitis

Dr Sami Mughni
Spring Hill/Port Richey (2 offices), Florida
Rheumatologist
Has 11 WG patients including my son
Saved my son's life by suspecting WG after he was in the hospital 2 days, a biopsy confirmed 4 days later.
He is extremely involved and even texts us with info. Great doctor!!

Dr. James Davidson
Monroe Clinic
Monroe, WI USA
Rheumatologist

Dr. Anthony Rogerson
Monroe Clinic
Monroe, WI USA
Otolaryngology/ENT

Dr. Joshua Morrison
Monroe Clinic
Monroe, WI USA
Neurologist

Specialist name: Dr. Joseph Lutt
Location (Country/State/City): USA/Colorado/Boulder
Area of specialisation: Rheumatologist

Specialist name: Dr Curry Koening
Location (Country/State/City): University of Utah, Health Center, Salt Lake City, Utah
Area of specialisation (e.g. Rheumy, Immunologist etc): Rheumatology/Vasculits
Web site: U of U Vasculitis Center

Dr. Paul Monach
Boston Medical Center
Rheumatology
Boston, Ma.

Dr. John Stone
Mass General Hospital
Rheumatology
Boston, Ma.

Specialist name: Dr Gregory Gardner
Location (Country/State/City):Seattle, Washington- University of Washington Medical Center
Area of specialisation (e.g. Rheumy, Immunologist etc): Rheumatology

Dr. Aryeh Fischer
Denver, Colorado-National Jewish
Rheumatology

Specialist name: Dr David Jayne
Location (Country/State/City): Addenbrooke's Hospital, Cambridge, England
Area of specialisation (e.g. Rheumy, Immunologist etc): Vasculitis

If we get enough of these, we could put them on a map like the member map. I haven't looked into it, but I would think there is a way to load a list of data points.

Quote:

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Originally Posted by vdub

If we get enough of these, we could put them on a map like the member map. I haven't looked into it, but I would think there is a way to load a list of data points.

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Great idea!!

Quote:

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Originally Posted by vdub

If we get enough of these, we could put them on a map like the member map. I haven't looked into it, but I would think there is a way to load a list of data points.

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Yes! And that would save me making a new website too!

FN van Zyl
Pretoria, South Africa
Rheumatologist

Quote:

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Originally Posted by andrew

Yes! And that would save me making a new website too!

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(tongue in cheek) But what would you do with all that extra spare time? That's what people think web development is, right? Whip out a new site in a weekend and it's DONE--NOT!!

Map is a good idea if we can get the appropriate info to pop up when hovered upon!

Here is a practice and my doctor:

Nephrology Associates of Northern Virginia, Inc. is led by Dr. Ali Assefi and has a staff of 9 nephrologists who all have worked with GPA patients.
I'm working with Dr. Franco Musio MD, FACP, FASN who specializes in nephrology (kidney issues) and has experience with multiple GPA patients.
Fairfax, VA 22033

Specialist name: Dr. Rebecca Manno at Johns Hopkins Vasculitis Center
Location (Country/State/City): Baltimore, MD 21029
Area of specialisation (e.g. Rheumy, Immunologist etc): Rheumatologist who specializes in GPA.

Specialist name: /Dr. Antoine Sreih
Location (Country/State/City): University of PENN
Area of specialisation: Rheumatologist, Vasculitis

Specialist name: Dr. Kenneth Warrington at Mayo Clinic
Location (Country/State/City): Rochester, MN 55902
Area of specialisation (e.g. Rheumy, Immunologist etc): Rheumatologist

Quote:

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Originally Posted by Gragnoc

Specialist name: Dr. Kenneth Warrington at Mayo Clinic
Location (Country/State/City): Rochester, MN 55902
Area of specialisation (e.g. Rheumy, Immunologist etc): Rheumatologist

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There are many other listed GPA specialists at Mayo. I see Ulrich Specks in Pulmonary department who does a lot of research in this field.

Quote:

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Originally Posted by drz

There are many other listed GPA specialists at Mayo. I see Ulrich Specks in Pulmonary department who does a lot of research in this field.

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I agree. The Mayo Clinic has GPA specialists in the Rheumatology, Pulmonary, and Nephrology Departsment. I am currently seeing Dr Kenneth Warrington.

Specialist name: Bóris Afonso Cruz,
Location (Country/State/City): Brazil, Minas Gerais, Belo Horizonte
Area of specialisation (e.g. Rheumy, Immunologist etc): Rheumatology, vaculitis.
He saved my life after lately diagnosed. Loic Guillevin's student an closely friend. L. Guillevin is French rheumatologist, one of the first who studied and successfully treated GW.

Quote:

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Originally Posted by Pete

Alexandra Villa Forte, MD
Cleveland, Ohio, United States
Rheumatologist specializing in vasculitis

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She is my GPA hero!

Hi Pete! Is Alexandra Brazilian? Just curiosity, maybe she know Dr, Bóris who treats my GW.

@Eduardo I’m not sure

Ok, thanks!

Our daughter has been treated by several Pediatric rheumatologists. One I recommend without hesitation is Suhas Radhakrishna, who works out of Rady Children's Hospital in San Diego, CA. Also, I have a shorter history with but was completely impressed by Pediatric rheumatologist Dr. Caroline Chang who is in Honolulu HA

Dr. John Cush,Rheumatologist, Dallas, TX. I have been seeing him for the past 11 years. He is great. He took over Dr. J Donald Smiley’s practice when he died...who I started seeing in 1982 when he diagnosed me. I have had WG for 37 years with 3 flares.


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Specialist name: Dr Pamela Freeman
Location (Country/State/City): US, Orlando, FL
Area of specialisation (e.g. Rheumy, Immunologist etc): Rheumatologist

Traveled from Denver to see Dr. Phillip Seo, Rheumatologst, at John Hopkins in Baltimore, MD

Until aged out, saw Dr. Melissa Cadnapaphornchai, Childrens Hospital Kidney Clinic.

Specialist name: Dr. Athan Tiliakos, Emory Clinic, Emory Hospital
Location (Country/State/City): United States / Georgia / Atlanta
Area of specialisation (e.g. Rheumy, Immunologist etc): Rheumatologist, Vasculitis

Specialist name: Dr. Alexandra Villa Forte, Cleveland Clinic, Vasculitis
Location (Country/State/City): United States / Ohio / Cleveland
Area of specialisation (e.g. Rheumy, Immunologist etc): Rheumatologist

Any GPA docs that are nephrologists? My experience is that division of rheumatology doesn't treat you if your kidneys become involved.

Quote:

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Originally Posted by little sister

Any GPA docs that are nephrologists? My experience is that division of rheumatology doesn't treat you if your kidneys become involved.

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My experience was having several specialists that all made recommendations to the one doctor who weighed and balanced the recommendations and made the final orders for treatment. They often conflicted since a treatment that might help one organ might be dangerous for another organ. My health care director consulted with this primary doctor to select what they thought was best option for treatment depending upon current status. One of the many specialists were nephrologists along with at least a half dozen others. They also consulted with several world known experts on how to treat my Wegener's GPA.

Here's who I see.

John Niles, MD
Vasculitis and Glomerulonephritis Center at Massachusetts General Hospital, Boston, MA, USA
Nephrologist/Internist

my team of Specialists

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Specialist name: Dr Anis Rauf
Location (Country/State/City): US/ IL/ Lombard
Area of specialisation (e.g. Rheumy, Immunologist etc): Nephrologist

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Specialist name: Dr Anisha Dua
Location (Country/State/City): US/ IL/ Chicago
Area of specialisation (e.g. Rheumy, Immunologist etc): Rheumatalogist


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Tampa Florida - part of Vasculitis Foundation - sees GPA patients every Wednesday
Yih Chang Lin, MD, USF - Division of Rheumatology

• 12901 Bruce B. Downs Blvd.
  Tampa FL 33612
• Email: [email protected]
• Phone: 8139742201

Dr Lin is very knowledgeable, bedside manner is more of a scientist than health care worker, however I have worked hard on making the relationship more heartfelt. I even bring him things I learn from here and from AI engines on cutting edge medications, etc. I trust his expertise.

My ENT doctor is Dr Jonathan Forman, in south Tampa, phone # 813-877-3100. he is extremely caring and has helped with the damage to Nose, Ear and Throat.

My new GPA doc. She’s a good listener and is maintaining my treatment regimen.

Lynne Fussner, MD
The Ohio State University Wexner Medical Center
Department of Pulmonology
(614)293-4925

She did a vasculitis fellowship under Ulrich Specks at Mayo Clinic.

I reluctantly left Dr VillaForte at Cleveland Clinic because the drive was getting to be too much.