directory of medical institutions associated - National Marfan ...
directory of medical institutions associated - National Marfan ...
directory of medical institutions associated - National Marfan ...
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DIRECTORY OF MEDICAL INSTITUTIONS ASSOCIATED<br />
WITH THE DIAGNOSIS AND TREATMENT OF THE<br />
MARFAN SYNDROME<br />
ARKANSAS<br />
Arkansas Children’s Hospital<br />
The Multidisciplinary Connective Tissue Clinic<br />
1 Children’s Way<br />
Little Rock, AR 72202<br />
Medical Director: R.Thomas Collins ll, M.D.<br />
Clinic Contact: Beth Martin, RN<br />
(501) 364-2088 eamartin@uams.edu<br />
Appointments (501) 364-2088 for Beth<br />
Clinic serves both adults and children<br />
California<br />
Stanford University Medical Center<br />
Stanford <strong>Marfan</strong> Syndrome & Aortic Center<br />
300 Pasteur Drive, Rm. H2157<br />
Stanford, CA 94305<br />
Medical Director: David H. Liang, M.D. Ph.D.<br />
Clinic contact: Sunny Pellone, Center Coordinator<br />
(650) 725-8246 spellone@stanfordmed.org<br />
Appointments :(650) 725-8246 for Sunny<br />
Clinic serves both adults and children<br />
Pr<strong>of</strong>essional Advisory Board Member: D. Craig Miller, M.D. David Liang M.D. Ph.D.<br />
Cedars-Sinai Medical Center<br />
<strong>Marfan</strong> Syndrome Center<br />
8700 Beverly Blvd, PACT Suite 400<br />
Los Angeles, CA 90048<br />
Medical Director: Ora K. Gordon M.D.and Robert Siegel M.D.<br />
Clinic contact: Mitchel Pariani, M.S, CGC (310) 423-9861 mitchel.pariani@cshs.org<br />
Appointments: (310) 423-9914<br />
Clinic serves both adults and children<br />
Loma Linda University Medical Center<br />
Heart and Imaging Center<br />
900 E. Washington St. Suite 150<br />
Colton, Ca 92324<br />
Medical Director: Padmini Varadarajan, M.D<br />
Clinic Contact: Amy Singh or Jennifer Gingras, RN<br />
909 835-1203 asingh@llu.edu or jgingras@llu.edu<br />
Adult appointments: (909) 835-1200 or 1888-558-2713<br />
Clinic serves adults<br />
Loma Linda University Medical Center<br />
International Heart Institute<br />
Pediatric Cardiology<br />
11234 Anderson St Suite 1617<br />
Loma Linda, CA 92354<br />
Medical Director: Ranae Larsen, M.D.<br />
Pediatrics appointments: (909) 558-4207
-2-<br />
Ahmanson/UCLA Adult Congenital Heart Disease Center<br />
<strong>Marfan</strong> Syndrome Clinic<br />
UCLA-Cardiovascular Center<br />
100 Medical Plaza, Suite 630<br />
Los Angeles, CA 90095<br />
Medical Director: Jamil Aboulhosn, M.D.<br />
Clinic contact: Pamela Miner, N.P.<br />
(310) 794-9629 pminer@mednet.ucla.edu<br />
Appointments- 310-794-9629 or email- achdc@mednet.ucla.edu<br />
Clinic serves both adults and children<br />
Colorado<br />
University <strong>of</strong> Colorado-Anschutz Medical Campus<br />
<strong>Marfan</strong> and Related Aorta Disorders Clinic<br />
Anschutz Inpatient Pavillon<br />
12605 E. 16 th Avenue<br />
Aurora, CO 80045<br />
Medical Director: Amber Khanna M.D.<br />
Clinic Contact: Mary Brandon Richardson, RN<br />
(720) 848-6532 mary.brandonrichardson@uch.edu<br />
Appointment: (720) 848-6532 for Mary<br />
Clinic serves both adults and children, childrens’ appointments coordinated at Children’s Hospital<br />
Dr. Yetman runs an outreach clinic for patients with <strong>Marfan</strong> syndrome in Denver, Colorado every<br />
6 months. Call Primary Children’s Medical Center in Utah for information- (801) 662-5400<br />
Florida<br />
Joe DiMaggio Children’s Hospital<br />
Cardiogenetic Clinic<br />
1150 N35th Ave. Suite 490<br />
Hollywood, FL 33021<br />
Medical Director: Roman Yusupov M.D.<br />
Clinic Contact: Genetics Department<br />
Appointments: 855-265-4MFS or 954-265-4MFS (4637).<br />
Clinic serves both adults and children<br />
Illinois<br />
Ann & Robert H. Lurie Children’s Hospital <strong>of</strong> Chicago<br />
The Connective Tissue Disorder Clinic,<br />
225 E. Chicago Ave Box 59<br />
Chicago, IL 60613<br />
Medical Director: Barbara K. Burton M.D (Genetics). and Luciana Young M.D. (Cardiology)<br />
Clinic Contact: Jessica Bucher, M.S. CGC (Genetics)<br />
(312) 227-6123 JBucher@luriechildrens.org<br />
Elizabeth Cappella MSN, APN, CPNP (Cardiology)<br />
(312) 227-4641 ECappella@luriechildrens.org<br />
Appointments: (312) 227-6120<br />
Clinic serves children to age 21
-3-<br />
Northwestern University Feinberg School <strong>of</strong> Medicine<br />
Northwestern Memorial Hospital <strong>Marfan</strong> Syndrome and Related Disorders Clinic<br />
675 N. St. Clair Street<br />
Suite 19-100<br />
Chicago, IL 60611<br />
Medical Director: S. Chris Malaisrie, M.D., Marla Mendelson, M.D.<br />
Clinic Contact: Amy Ochs MSN, APN, CNP<br />
(312)695-5893 aochs@nmh.org<br />
Appointments: (312) 695-5893 for Amy<br />
Clinic serves adults<br />
University <strong>of</strong> Chicago Medicine<br />
The <strong>Marfan</strong> Syndrome Center<br />
5841 South Maryland Ave Rm C104 Section <strong>of</strong> Pediatric Cardiology<br />
Chicago, IL 60637<br />
Medical Director: Peter Varga M.D. and Darrel Waggoner M.D.<br />
Clinic Contact: Lisa Dellefave-Castillo MS, CGC<br />
773-702-4310 ldellefa@medicine.bsd.uchicago.edu<br />
Appointments: 773 702-4310 Genetics or 773-702-6172- Pediatric Cardiology Department (adults<br />
and children are scheduled the same way)<br />
Clinic serves both adults and children<br />
Indiana<br />
Peyton Manning Children’s Hospital at St. Vincent<br />
Connective Tissue Disorders Clinic<br />
8402 Harcourt Road Suite 300<br />
Indianapolis, IN 46260<br />
Medical Director: Luis F. Escobar, M.D.<br />
Clinic Contact: Dima El-Khechen, MS, LGC<br />
(317) 338-5288 dxelkhec@stvincent.org<br />
Appointments: (317) 338-5288 ask for Dima<br />
Clinic serves both adults and children<br />
Riley Hospital for Children-Indiana University Health<br />
Indiana University Department <strong>of</strong> Medical and Molecular Genetics<br />
975 W. Walnut Street 1B-130<br />
Indianapolis, IN 46202<br />
Medical Director: David D. Weaver, M.D.<br />
Program Contact: Katelyn Hanson, R.N. C.G.C.<br />
(317) 274- 2450 kkhanson@iupui.edu<br />
Appointments: (317) 274-3966- Kenya Alexander<br />
An echocardiogram and an ophthalmology evaluation should be completed prior to referral to the<br />
Medical Genetics Clinic<br />
Clinic serves both adults and children<br />
Kentucky<br />
University <strong>of</strong> Louisville<br />
<strong>Marfan</strong> Syndrome and Connective Tissue Disease Clinic<br />
601 South Floyd Street Suite 602<br />
Louisville, KY 40202<br />
Medical Director: Lucinda Wright, M.D.<br />
Clinic Contact: Erin Eckenfels<br />
(502) 585-4802 erine@pcaheart.org<br />
Appointment: 502 585-4802<br />
Clinic serves children to age 21
-4-<br />
Maryland<br />
Johns Hopkins Hospital<br />
Connective Tissue and Related Disorders Clinic<br />
600 N. Wolfe Street- Blalock 1008<br />
Baltimore, MD 21287<br />
Medical Director: Hal Dietz, M.D.<br />
Clinic Contact: Gretchen Oswald M.S., CGC<br />
(410) 955-0316; goswald1@jhmi.edu<br />
Appointments: (410) 955-3071 option 1<br />
Clinic serves both adults and children<br />
Pr<strong>of</strong>essional Advisory Board Members: Duke Cameron, M.D. Hal Dietz, M.D. Paul D. Sponseller,<br />
M.D. Vincent L. Gott, M.D.<br />
Massachusetts<br />
Boston Children’s Hospital<br />
<strong>Marfan</strong> Syndrome, Connective Tissue, and Related Disorders Program<br />
Department <strong>of</strong> Cardiology<br />
300 Longwood Avenue<br />
Boston, MA 02115<br />
Medical Director: Ronald V. Lacro, M.D.<br />
Co-Director: Michael N. Singh, M.D.<br />
Clinic Contact: Martha King, R.N.<br />
(617) 355-8794 Martha.King@cardio.chboston.org<br />
Appointments: 617-355-8794 for Liz Berryan<br />
Clinic serves both adults and children<br />
Pr<strong>of</strong>essional Advisory Board Member: Ronald V. Lacro, M.D.<br />
Brigham and Women’s Hospital<br />
<strong>Marfan</strong> Syndrome and Related Connective Tissue Disorders Clinic<br />
75 Francis Street<br />
Boston, MA 02115<br />
Medical Director: Michael N. Singh, M.D.<br />
Co-Director: Natasha Frank, M.D.<br />
Clinic Contact: (617) 355-8794 – Liz Berryan (cardiology administrative assistant)<br />
Appointment: 857-307 4040<br />
Clinic serves ages 18 and over<br />
Michigan<br />
University <strong>of</strong> Michigan Medical Center<br />
University <strong>of</strong> Michigan Aortic and Genetic Syndrome Center<br />
5143 Cardiovascular Center Drive<br />
1500 E. Medical Center Drive<br />
Ann Arbor, MI 48109<br />
Co-Medical Directors: Anna M. Booher M.D. and Himanshu J. Patel M.D.<br />
Clinic Contact: Mary Passow RN, BSN and Diane Salata ,RN<br />
Appointment: 888 287-1082<br />
Clinic serves both adults and children
-5-<br />
Minnesota<br />
Mayo Clinic<br />
<strong>Marfan</strong> and Thoracic Aorta Clinic<br />
200 First Street SW<br />
Rochester, MN 55905<br />
Medical Director: Juan Bowen M.D and Joseph Dearani M.D. co-director<br />
Clinic Contact: Mary Silhasek, R.N.<br />
(507) 284 3681 silhasek.mary@mayo.edu<br />
Appointments: (507) 538- 8124 to speak to one <strong>of</strong> the appointment coordinators.<br />
Clinic serves both adults and children<br />
Pr<strong>of</strong>essional Advisory Board Member: Heidi Connolly M.D.<br />
Missouri<br />
Washington University School <strong>of</strong> Medicine, Barnes-Jewish Hospital<br />
<strong>Marfan</strong> Syndrome Clinic and Center for Genetically Triggered Aortic Diseases<br />
Adults: 4921 Parkview Place Suite 8A<br />
St. Louis, MO 63110<br />
Medical Director and Cardiologist: Alan Braverman, M.D. F.A.C.C.<br />
Geneticist: Marcia Willing M.D.<br />
Clinic Contact: Dana Gima RN., BSN. and Barb Stehman RN, BSN in<br />
Dr. Braverman’s <strong>of</strong>fice<br />
(314) 362-1291 or 1-888-210-8375<br />
Appointment: (314) 362-1291 or 1-888-210-8375<br />
Clinic serves 16 and older<br />
Pr<strong>of</strong>essional Advisory Board Member: Alan Braverman, MD<br />
Children:<br />
St. Louis Children’s Hospital<br />
One Children’s Place<br />
St. Louis MO 63110<br />
Cardiologist: St. Louis Children’s Hospital Cardiology Staff<br />
Geneticist: Marcia Willing, M.D.<br />
Appointments: 314-454-6095<br />
Pr<strong>of</strong>essional Advisory Board Member: Alan Braverman, M.D.<br />
New York<br />
New York Presbyterian Hospital/Weill Cornell Medical College<br />
Division <strong>of</strong> Human Genetics<br />
525 East 68 St. Box128<br />
New York, NY 10065<br />
Medical Director: Jessica G. Davis, M.D.<br />
Appointments: 646 962-2205<br />
Clinic serves both adults and children<br />
Pr<strong>of</strong>essional Advisory Board Member: Jessica G. Davis, M.D., Richard Devereux, M.D.<br />
Mount Sinai Medical Center<br />
Cardiovascular Genetics Program<br />
1468 Madison Ave<br />
Annenberg Building 3 rd Floor<br />
Division <strong>of</strong> Pediatric Cardiology<br />
New York, NY 10029<br />
Medical Director: Bruce D. Gelb M.D.<br />
Clinic Contact: Meghan MacNeal M.S., M.P.H<br />
(212) 241-6012 Meghan.MacNeal@mssm.edu<br />
Appointments: (212) 241-6012 for Meghan<br />
Clinic serves adults and children
-6-<br />
North Shore LIJ Health System<br />
<strong>Marfan</strong> Center at Steven and Alexandra Cohen Children’s Medical Center <strong>of</strong> New York<br />
269-01 76 th Avenue<br />
New Hyde Park, NY 11040<br />
Medical Director: Angela Romano M.D,<br />
Co- Directors: Joyce Fox M.D. and Scott Pilgrim M.D.<br />
Office Contact: Joanne Gubitosi, RN, BSN<br />
718 470-7350 jgubitos@nshs.edu<br />
Appointments: (718)470-7350<br />
Clinic serves both adults and children<br />
Winthrop University Hospital<br />
Winthrop Aortic Institute<br />
120 Mineola Blvd. Suite 500<br />
Mineola, NY 11501<br />
Medical Director: George Gubernik<strong>of</strong>f, MD<br />
Clinic Contact: Diane Onorato<br />
516 663-2046 donorato@winthrop.org<br />
Appointments: 516 663-2046 for Diane<br />
Clinic serves both adults and children<br />
New York University- Langone Medical Center<br />
NYULMC Aortic Disease Center<br />
530 First Avenue Suite9V<br />
New York NY 10018<br />
Medical Director: Abe DeAnda, M.D.<br />
Clinic Contact: Patricia Ursomanno, PhD, RN, ANP<br />
(212) 263-1064 patricia.ursomanno@nyumc.org<br />
Appointments: Pat at 212 263-1064 or1-866-399-HEART<br />
Clinic serves adults<br />
Lenox Hill Hospital<br />
Aortic Wellness Center<br />
100 East 77 th Street<br />
New York, NY 10075<br />
Medical Director: Tandeep K. Bhatti, M.D. (Cardiovascular Diseases)<br />
Clinic Contact: Diana Duenas<br />
(212) 434-6030<br />
Appointments: (212) 434-6030 aorticwellnesscenter@lenoxhill.net<br />
Clinic serves adults, 18 and older<br />
North Carolina<br />
Duke University Medical Center<br />
Pediatric Medical Genetics and Pediatric Cardiology<br />
2301 Erwin Road Box# 103857<br />
Durham, NC 27705<br />
Medical Director: Stephanie B. Wechsler M.D. (Cardiology and Genetics) and Marie T. McDonald<br />
M.D. (Genetics)<br />
Clinic Contact: Liz Heise, MS, CGC<br />
Appointments: (919) 668-2196<br />
Clinic serves both adults and children
-7-<br />
Ohio<br />
Cleveland Clinic<br />
<strong>Marfan</strong> Syndrome and Connective Tissue Disorders Clinic<br />
9500 Euclid Avenue J4-1<br />
Cleveland, OH 44195<br />
Medical Director: Lars G. Svensson, M.D., PhD.<br />
Clinic Contact: Rhonda Sweeney<br />
216 445-4813 sweener@ccf.org<br />
Appointment: (216) 445-4813 for Rhonda<br />
Clinic serves both adults and children<br />
Cincinnati Children’s Hospital Medical Center<br />
Cardiovascular Genetics Clinic<br />
3333 Burnet Avenue<br />
Cincinnati, OH 45229<br />
Medical Director: John Lynn Jefferies M.D. M.P.H.<br />
Clinic Contact: Amy Shikany M.S. CGC<br />
(513) 803-3317 amy.garrison@cchmc.org<br />
Appointment: (513) 803-3317 for Amy<br />
Clinic serves both adults and children<br />
-<br />
University Hospitals Case Medical Center<br />
Connective Tissue Disorder Clinic<br />
Center for Human Genetics<br />
11100 Euclid Avenue<br />
Lakeside 1500<br />
Cleveland, OH 44106<br />
Medical Director: Anna Mitchell, M.D., Ph.D.<br />
Clinic Contact: Sarah Grimes Hodges M.S. CGC<br />
(216) 844-3936 sarah.grimes@uhhospitals.org<br />
Appointment: Center for Human Genetics 216-844-3936<br />
Clinic serves both adults and children<br />
Nationwide Children’s Hospital<br />
<strong>Marfan</strong> Screening Clinic<br />
700 Children’s Drive<br />
Columbus, OH 43205<br />
Medical Director: Dennis Bartholomew, MD<br />
Clinic Contact: Sawona Biswas CGC (614) 355 3619 sawona.biswas@nationwidechildrens.org<br />
Appointment: 614 722-3535<br />
Clinic serves both children and adults<br />
Pennsylvania<br />
University <strong>of</strong> Pennsylvania Health System<br />
<strong>Marfan</strong> Syndrome and Related Conditions Clinic<br />
Perelman Center for Advanced Medicine<br />
34 th St. and Civic Center Blvd. First Floor<br />
Philadelphia, PA 19104<br />
Medical Director: Reed Pyeritz, M.D., Ph.D.<br />
Clinic Contact: Eileen Stewart, Clinic Coordinator<br />
215 662-4740<br />
eileen.stewart@uphs.upenn.edu<br />
Appointment: (215) 662-4740 for Eileen<br />
Clinic serves adults and children 12 years and over<br />
Pr<strong>of</strong>essional Advisory Board Member: Reed Pyeritz, M.D., Ph.D.<br />
.
Children’s Hospital <strong>of</strong> Philadelphia<br />
Connective Tissue Clinic<br />
34 th and Civic Center Blvd<br />
Philadelphia PA 19104-4318<br />
Medical Director: Paige Kaplan, M.D.<br />
Clinic Contact: Colleen Clarke, M.S., CGC<br />
(215) 590-2825 clarkec@email.chop.edu<br />
Appointment: (215) 590-3376<br />
Clinic serves children 0-18<br />
--8-<br />
Texas<br />
University <strong>of</strong> Texas Physicians<br />
Medical Genetics and Multidisciplinary Aortic and Vascular Disease Clinic<br />
6410 Fannin Street, Suite 600<br />
Houston, TX 77030<br />
Medical Director: Dianna M. Milewicz, M.D. Ph.D.<br />
Clinic Contact: Alana Cecchi, M.S., CGC<br />
(713) 500 6865 Alana.C.Cecchi@uth.tmc.edu<br />
Appointment: (713) 500-6865 for Alana<br />
Clinic serves both adults and children<br />
Pr<strong>of</strong>essional Advisory Board Member: Dianna M. Milewicz, M.D. Ph.D<br />
Utah<br />
Primary Children’s Medical Center<br />
<strong>Marfan</strong> Clinic<br />
100 N. Mario Capecchi Drive, Suite 1500<br />
Salt Lake City, UT 84113<br />
Medical Director: Angela Yetman, M.D.<br />
Clinic contact: Louise Jahn, RN<br />
(801) 662-5462 louise.jahn@imail.org<br />
Appointments: (801) 662-5400 ask for appointment for <strong>Marfan</strong> syndrome<br />
Clinic serves both adults and children<br />
Washington<br />
University <strong>of</strong> Washington Medical Center<br />
Genetic Medicine Clinic<br />
1959 NE Pacific Street<br />
Box# 357720<br />
Seattle, WA 98195-7720<br />
Medical Director: Fuki Hisama M.D.<br />
Clinic Contact: Debbie Olson, Support Supervisor<br />
(206) 598-4030 olsondl@u.washington.edu<br />
Appointment: (206) 598-4030 for Debbie Olson<br />
Clinic serves both adults and children<br />
Pr<strong>of</strong>essional Advisory Board Member: Peter Byers, M.D.<br />
Seattle Children’s Hospital<br />
Seattle Children’s Heart Center<br />
4800 Sandpoint Way NE<br />
Seattle, WA 98105<br />
Medical Director: Mark Lewin M.D<br />
Clinic Contact: Camie Spieker, RN, BSN<br />
206 987-3693 camie.spieker@seattlechildrens.org<br />
Appointments: 206 987-2015 scheduling.center@seattlechildrens.org<br />
Clinic serves children to age 21
-9-<br />
Wisconsin<br />
Children’s Hospital <strong>of</strong> Wisconsin and The Medical College <strong>of</strong> Wisconsin<br />
The Wisconsin <strong>Marfan</strong> and Related Connective Tissue Disorder Program<br />
9000 W. Wisconsin Ave.<br />
Milwaukee, WI 53226<br />
Medical Director: Michael Earing, M.D.<br />
Clinic Contact: Lindsey Katzmark, APNP<br />
414 266-4757 lkatzmark@chw.org<br />
Appointment: 414 607-5280<br />
Clinic serves both adults and children<br />
DISCLAIMER<br />
The NMF has not attempted to verify the accuracy <strong>of</strong> any <strong>of</strong> the information listed hereon and has not and is not certifying,<br />
recommending, referring or warranting the quality <strong>of</strong> care provided by any <strong>of</strong> the <strong>institutions</strong> listed in this <strong>directory</strong>. THIS<br />
LISTING IS A DIRECTORY NOT A REFERRAL SERVICE. It is important to understand the difference between a<br />
Directory and a Referral Service.<br />
A Directory is simply a list <strong>of</strong> pr<strong>of</strong>essionals or businesses, and no recommendations or guarantees are made regarding<br />
the quality <strong>of</strong> service you might expect from any <strong>of</strong> the pr<strong>of</strong>essionals or businesses listed. The Telephone Yellow Pages is<br />
a common and well-known example <strong>of</strong> a Directory. Some businesses are listed for free, and some businesses pay an<br />
advertising fee for a larger listing or display ad. Whether the listing is free or paid, no recommendations are expressed or<br />
implied, regarding the quality <strong>of</strong> services provided. The NMF has not accepted a fee from any institution listed above.<br />
A Referral Service is a screening service, and a recommendation is being made, with at least some endorsement <strong>of</strong> the<br />
pr<strong>of</strong>essionals or businesses listed in the service. Usually, a Referral Service will require a pr<strong>of</strong>essional or a business to<br />
meet some quality criteria before they are accepted into the Referral Service. This might include a specific number <strong>of</strong><br />
years <strong>of</strong> experience, passing a special test or training program not required by everyone in the pr<strong>of</strong>ession or business, or<br />
an absence <strong>of</strong> consumer complaints about the pr<strong>of</strong>essional or business. The <strong>National</strong> Register <strong>of</strong> Health Service<br />
Providers is a good example, or the various Board Certifications available in Medicine, which all require passing an<br />
examination, in addition to basic licensing as a healthcare pr<strong>of</strong>essional.<br />
The NMF does not provide a referral service. We do not verify the license <strong>of</strong> anyone listed. In many instances, the only<br />
information that we have about their pr<strong>of</strong>essional backgrounds is what they have told us.<br />
We request that you please use this <strong>directory</strong> as you would a telephone <strong>directory</strong>, to locate pr<strong>of</strong>essionals in your<br />
community. Once you locate a pr<strong>of</strong>essional, please investigate their background to insure that they are licensed, and that<br />
they do not have a history <strong>of</strong> complaints or disciplinary problems with their pr<strong>of</strong>essional licensing board.<br />
Updated 12-12
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