Media Contacts

ALGERIA - (Association Shifa des Maladies NeuroMusculaires(ASMNM)).
Press contact: Dr Bouras Abdelkader: bouras@shtrude.org
ARGENTINA - (Fundación GEISER).
Press contact: Virginia Llera: virginialejandrallera@yahoo.com
ARMENIA - ("Neurohereditary Diseases" Charity Association).
Press contact: Albert Matevosyan: matev2007@yahoo.com
AUSTRALIA - (The Association of Genetic Support of Australasia (AGSA)).
Press contact: Dianne Petrie: dianne@agsa-geneticsupport.org.au
AUSTRIA - (Klinefelter Austria).
Press contact: Helmut Kronewitter: rarediseaseday@klinefelter.at
BELGIUM - (RaDiOrg.be).
Press contact: Jonathan Ventura: office@radiorg.be
BRAZIL - (Grupo de Estudos de Doenças Raras BRASIL).
Press contact: Marcos teixeira: presidenciazn@yahoo.com.br
BULGARIA - (National Alliance of People with Rare Diseases).
Press contact: Mr. Vladimir Tomov: tomov@raredis.org
BURKINA FASO - (FITIMA).
Press contact: Zoulfaou Dankourma/ FITIMA Burkina: communication@fitima.org
CAMEROON - (ALMOHA).
Press contact: Nadine Abondo : almoha.asso@yahoo.fr
CANADA - (Canadian Organization for Rare Disorders).
Press contact: Durhane Wong-Rieger, President: durhane@sympatico.ca
CHILE - (Corporación ANACROJ Ayuda al Niño con Artritis Juvenil).
Press contact: Paloma Rivera Montero: palomapazrm@gmail.com
CHINA - (China-Dolls Center for Rare Disorders).
Press contact: Lane Shaw: xiaolei@chinadolls.org.cn
COLOMBIA - (Asociación Colombiana de Pacientes con Enfermedades del Complemento (APEC Colombia)).
Press contact: Luz Marina Gamarra - Jenny Marcela Bautista: info@accesodirecto.com.co
CROATIA - (The Croatian Society for Rare Diseases - Hrvatska udruga za rijetke bolesti).
Press contact: Vlasta Zmazek: vlasta@debra-croatia.com
DENMARK - (Rare Disorders Denmark).
Press contact: Katrine Heinild: kh@sjaeldnediagnoser.dk
EUROPE - (EURORDIS - The European Organisation for Rare Diseases).
Press contact: Paloma Tejada: paloma.tejada@eurordis.org
FINLAND - (The Finnish Network for Rare Diseases).
Press contact: Lauri Kervinen: lauri.kervinen@harvinaiset.fi
FRANCE - (Alliance Maladies Rares).
Press contact: Isabelle Hoareau: ihoareau@maladiesrares.org
GEORGIA - (GEORGIAN FOUNDATION FOR GENETIC AND RARE DISEASES (GeRaD)).
Press contact: Dr Oleg Kvlividze: grd.georgia@gmail.com, kvlividze@gmail.com
GERMANY - (ACHSE Allianz Chronischer seltener Erkrankungen).
Press contact: Rania von der Ropp: rania.vonderropp@achse-online.de
GREECE - (Greek Alliance for Rare Diseases).
Press contact: Marianna Lambrou : gr-pespa@otenet.gr
GUATEMALA - (Asociación Para Todos).
Press contact: Jaime Urias: juntadirectiva@asociacionparatodos.org
HONG KONG - (Joshua Hellmann Foundation for Orphan Disease).
Press contact: Kimmy Lam: jhforphandisease@gmail.com
HUNGARY - (HUFERDIS - Hungarian Federation of People with Rare and Congenital Diseases - Rare Diseases Hungary).
Press contact: Dr. Pogány Gábor: pogany@rirosz.hu
INDIA - (Lysosomal Storage Disorders Support Society).
Press contact: Prasanna Kumar B Shirol: prasannashirol@lsdss.org
IRAN - (Rare Diseases Foundation of Iran).
Press contact: elham akbari: irs@radoir.com
IRELAND - (The Genetic and Rare Disorders Organisation (GRDO)).
Press contact: Avril Daly – Chairperson GRDO: avril.daly@fightingblindness.ie
ITALY - (UNIAMO Federazione Italiana Malattie Rare onlus).
Press contact: Serena Bartezzati: serena.bartezzati@uniamo.org
JAPAN - (PRIP Tokyo/JPA(Japan Patent Association)).
Press contact: Yukiko Nishimura: contact@prip-tokyo.jp
LITHUANIA - (Association for Hereditary Cancer ).
Press contact: Ramunas Janavicius: info@pvas.lt
MALTA - (Malta Health Network.).
Press contact: Philip CHIRCOP: phchircop@gmail.com
MEXICO - (Proyecto Pide un Deseo México, i.a.p.).
Press contact: David Peña: david@pideundeseo.org
NETHERLANDS - (Dutch Genetic Alliance (VSOP)).
Press contact: Dr. C. Oosterwijk: c.oosterwijk@vsop.nl
NEW ZEALAND - (NEW ZEALAND ORGANISATION FOR RARE DISORDERS (NZORD)).
Press contact: John Forman: exec.director@nzord.org.nz
NORWAY - (Norwegian Directorate for Health, Rehabilitation and Rare Disorders Department).
Press contact: Stein Are Aksnes: saa@helsedir.no
PAKISTAN - (Pakistan Medical Research Council).
Press contact: Muhammad Arif Nadeem Saqib: pmrc@comsats.net.pk
PANAMA - (Fundacion Ninos de Cristal).
Press contact: Dayana M. de Núñez: dayanamitchell@gmail.com
PHILIPPINES - (Philippine Society for Orphan Disorders. Inc. (PSOD)).
Press contact: Cynthia K. Magdaraog, President: info@psod.org.ph
POLAND - (Poland - The National Forum for the Treatment of Rare Diseases).
Press contact: Mirosław Zieliński: sekretariat@rzadkiechoroby.pl
PORTUGAL - (FEDRA - Federação das doenças raras + APADR - Aliança Portuguesa de Associaçiones das Doenças Raras).
Press contact: FEDRA - assessoria.fedra@hotmail.com: APADR - sararesende@scomunicacao.com
ROMANIA - (Romanian National Alliance for Rare Diseases).
Press contact: Zsuzsa Almasi: zsuzsalazar@apwromania.ro
RUSSIAN FEDERATION - (National Association of Organization of Patients with Rare Diseases «Genetics» & Russian Patients Union - Rare Disease Working Group).
Press contact: Polina Radzjabova / Irina Myasnikova : nacgenetic@raredis.org / miv20@mail.ru
SERBIA - (National Organization of Rare Diseases Serbia (NORDS)).
Press contact: Jelena Milosevic: office@norbs.rs
SLOVENIA - (Cystic Fibrosis Association of Slovenia - Društvo za cistično fibrozo Slovenije).
Press contact: Ms. Slavka Grmek Ugovšek: cisticna.fibroza.slo@gmail.com
SOUTH AFRICA - (Pituitary community South Africa (PICOMSA)).
Press contact: Ernest Lundu: elundu@ananzi.co.za
SPAIN - (Federación Española de Enfermedades Raras).
Press contact: María Tomé: comunicacion@enfermedades-raras.org
SWEDEN - (Rare diseases Sweden (Riksförbundet Sällsynta diagnoser) ).
Press contact: Raoul Dammert: info@sallsyntadiagnoser.se
SWITZERLAND - (ProRaris - Alliance Maladies Rares Suisse).
Press contact: Mrs Esther Prigioni: eneiditsch@proraris.ch
UKRAINE - (Kharkiv Charitable Foundation "Children with Spinal Muscular Atrophy").
Press contact: Vitaliy Matyushenko: VitaliyMatyushenko@csma.org.ua
UNITED KINGDOM - (Rare Disease UK & Genetic Interest Group).
Press contact: Stephen Nutt: stephen@raredisease.org.uk
URUGUAY - (Pdta. ATUERU (Asociación Todos Unidos Enfermedades Raras Uruguay)).
Press contact: Ninel Firppo: atueru@enfermedadesrarasuruguay.org.uy
USA - (NORD).
Press contact: Mary Dunkle: mdunkle@rarediseases.org
VENEZUELA - (AVEPEL, Asociacion Venezolana de Pacientes con Enfermedades Lisosomales).
Press contact: Karin Colmenares: kcolmenares@mc-intercom.com