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Contact information 2024 "Update in progress"
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IPC Representatives + IFOPA Staff + IFOPA Board + ICC Doctors
For Corrections & Updates Contact: marie@fopsverige.se +46708362662
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IPC Representatives (Sorted by Country)
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First NameLast NameMobile/WhatsAppEmailCOUNTRYWebsite/sExtra info
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IPC Steering Committe: Michelle, IFOPA, Chris, UK, Moira, Argentina, Marie, Sweden, Nadine, Germany.
ipcsteering@ifopa.org
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OdetteSchwegler(+27) 83 444 1880odette@blinkpictures.netAFRICA (South Africa)https://tinsoldiers.orghttp://www.blinkpictures.net
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AFRICA (South Africa)https://fopafrica.org (not up yet)<- Patient Organisation Website
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MoiraLiljestrom(+54) 9 11 4145 5391moiralil@gmail.comARGENTINAhttp://fundacionfop.org.ar
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BrookeScott(+61) 22511797brooke_scott@y7mail.comAUSTRALIAhttps://fopaustralia.org
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JanainaKhunBRAZILhttp://www.fopbrasil.org.br
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KarenMunro(+1) 604-837-8460canadianfopnetwork@live.comCANADAhttp://www.cfopn.org
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StevenShi(+86) 133 1126 0965stevenshi81@163.comCHINA
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Julie E. Christensen(+45) 30 34 19 83julieechristensen96@gmail.comDENMARKhttps://uniquejulie.dk/<- Personal FOP-Blog and info about FOP
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AntoineLaguotte(+33) 6 19 92 04 98antoine.lagoutte@fopfrance.frFRANCEwww.fopfrance.fr
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Dini (Nadine)Grossman(+49) 176 84050727nadine.fop.science@gmail.comGERMANYwww.fop-ev.de
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SunilLadwa(+91) 99451 11222sunil@fopindia.orgINDIAhttps://fopindia.org
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MassimoAlfiero(+39) 335 598 9960massimo.alfieri59@gmail.comITALYhttp://www.fopitalia.it
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EnricoChristoforetti(+39) 339 726 8458enrico.cristoforetti@gmail.comITALYhttp://www.fopitalia.it
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JAPAN
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JulianaLouise(+60) 165277467jjlyanaa@gmail.comMALAYZIA
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Anabel Montoya Ortega(+52) 1 56 1164 2454anabelmontoyaortega@gmail.comMEXICO
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SaskiaBlonk(+31)6 54677163info@geneesfop.nlNETHERLANDShttps://fopstichting.nl
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Robert Pióro(+48) 504 234 273piororobert@gmail.com POLANDwww.facebook.com/stowarzyszenie.fop.polska/
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AnnaBelyaeva(+7) 903 567 33 11belyaevaa@yandex.ruRUSSIAhttp://foprussia.ru
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JelenaMilosevic(+381) 63 680221jelenamilosevic223@gmail.comSERBIA
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KerryK.J Leelkj1326@naver.comSOUTH KOREA
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LorenaMorenoSPAINhttps://aefop-es.org
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Marie H.Fahlberg(+46) 708 362 662mariehfahlberg@gmail.comSWEDEN (Nordic/Balticum)www.fopsverige.sewww.mariehfahlberg.se
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info.fopforeningen@gmail.comSWEDEN (Nordic/Balticum)https://fopforeningen.se<- The Patient Organisations Website
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Roger-RenéMüllerroger@noicisiamo.chSwitzerland
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ChrisBedford-Gay(+44) 7810 372 151chris@fopfriends.com UKhttps://fopfriends.com
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IFOPA Reprepresentative in the IPC + IFOPA Staff + IFOPA Boardmembers
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First NameLast NameMobile/WhatsAppEmailExtra info
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IFOPA Staff: www.ifopa.org/staff
<- Read more about the staff
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Michelle DavisExecutive Director(+1) 816 809 2772michelle.davis@ifopa.org
IPC Steering Committe: Michelle, Chris, Moira, Marie, Nadine.
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DanielleKerkovich(+1) 202-812-6462danielle.kerkovich@ifopa.org
Director of Research Development and Partnerships
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MelissaDavis(+1) 605-877-5289melissa.davis@ifopa.org
Family Services Coordinator
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HopeNewport(+1) 785-294-1607hope.newport@ifopa.org
Family Services Manager
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JamieRoach(+1) 816-674-8474jamie.roach@ifopa.orgOperations Director
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CathrynRoys(+1) 843-709-3244cathryn.roys@ifopa.org
Fundraising and Special Projects Manager
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Sammi Kile(+1 ) 202-812-6462sammi.kile@ifopa.org
FOP Registry Project Manager
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CheyPayson(+1) 978-875-3500chey.payson@ifopa.orgProgram Specialist
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2024email. board@ifopa.org
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IFOPA Boardmembers: www.ifopa.org/board_of_directors
<- Read more about the boardmembers
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Rebecca WallaceBoard ChairFOP mother
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Nadine Großmann
Vice ChairFOP patient
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Emma AlbeeSecretaryFOP patient
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Jamal PorterTreasurerFOP father
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Helen Bedbord-GayBoard memberFOP mother (UK)
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Kyle BrinkmanBoard MemberFOP father
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Chrissy FlexerBoard Member"Aunt Chrissy"
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Molly RhodesBoard Member
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Manuel RobertBoard MemberFOP patient
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Sue KahnBoard Member
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Hollie SchmidtBoard Member
Executive Committee Member-at-Large
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ICC The International Clinical Council of FOP (Sorted by Country)
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First NameLast NameEmailCOUNTRYCityExtra info
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FOP Treatment Guidelines: www.iccfop.org/guidelines/
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ICC Contact Information: www.iccfop.org/icc-members/
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Chris
Scott, MBChB, FCPaed
christiaanscott@gmail.comAFRICA (South Africa)Cape Town
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CarmenL. De Cunto, MDARGENTINABuenos Aires
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PatriciaDelai, MDpatricia.delai@gmail.comBRAZILSão Paulo-SP
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Clive
S. Friedman, BDS (Diplomate AAPD)
CANADALondon
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KeqinZhang, MD, PhDCHINAShanghai
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GenevieveBaujat, MDFRANCEParis
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RolfMorhart, MDGERMANYGarmisch- Partenkirchen
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VrishaMadhuri, INDIAVellore
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MajaDiRocco, MDITALYGenoa
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NobuhikoHaga, MDJAPANTokyo
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Tae-JoonCho, MDREPUBLIC of KOREASeoul
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Marelise
W. Eekhoff, MD, PhD
THE NETHERLANDSAmsterdam
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J. Coen
Netelenbos, MD, PhD
THE NETHERLANDSAmsterdam
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Richard
Keen, BS, PhD, FRCP
UKLondon
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Amanda
Cali, Patient Advocate
akanga41@gmail.comUSANew Jersey
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Mona
Al Mukaddam, MD, MS, CCD
USAPhiladelphia
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FredS. Kaplan, MDUSAPhiladelphia
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ZviGrunwald, MDUSAPhiladelphia
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Robert
J. Diecidue, DMD, MD, MBA, MPH
USAPhiladelphia
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Bob
J. Pignolo, MD, PhD
USARochester
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EdHsiao, MD, PhDUSASan Francisco
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Michael
Zasloff, MD, PhD
USAWashington
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