ARGENTINA - (Fundación GEISER).
Press contact: Virginia Llera: virginialejandrallera@yahoo.com

AUSTRALIA - (The Association of Genetic Support of Australasia (AGSA)).
Press contact: Dianne Petrie: dianne@agsa-geneticsupport.org.au

AUSTRIA - (Orphanet Austria).
Press contact: Christine Schragel: christine.schragel@meduniwien.ac.at

BELGIUM - (RaDiOrg.BE).
Press contact: Lut De Baere: info@radiorg.be

BULGARIA - (National Alliance of People with Rare Diseases).
Press contact: Mr. Vladimir Tomov: tomov@raredis.org

BURKINA FASO - (FITIMA).
Press contact: Nina BAZAME / 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

CHINA - (China-Dolls Care and Support Association).
Press contact: yi-ou wang: yioufly@gmail.com

COLOMBIA - (Asociación Colombiana de Pacientes con Enfermedades de Depósito Lisosomal (ACOPEL)).
Press contact: Luz Marina Gamarra: info@accesodirecto.com.co

CROATIA - (The Croatian Society of Patients with Rare Diseases/Hrvatska udruga bolesnika s rijetkim bolestima).
Press contact: Nataša Bijelić: rijetke.bolesti@gmail.com

DENMARK - (Rare Disorders Denmark).
Press contact: Lærke Gade Bjerregaard: lgbj@sjaeldnediagnoser.dk

EUROPE - (EURORDIS).
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

GERMANY - (ACHSE Allianz Chronischer seltener Erkrankungen).
Press contact: Rania von der Ropp: rania.vonderropp@achse-online.de

GREECE - (Πανελλήνια Ένωση Σπανίων Παθήσεων).
Press contact: Marianna Lambrou : gr-pespa@otenet.gr

HONG KONG - (Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group (HKMPS)).
Press contact: Inez Wu: inez@bbluesky.com

HUNGARY - (HUFERDIS - Hungarian Federation of People with Rare and Congenital Diseases - Rare Diseases Hungary).
Press contact: Dr. Pogány Gábor: pogany@rirosz.hu

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: Barbara Pre: barbara.pre@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

NETHERLANDS - (Dutch Genetic Alliance (VSOP)).
Press contact: Dr. C. Oosterwijk: c.oosterwijk@vsop.nl

POLAND - (Poland - Foundation for Help Families and Suffers for Cystic Fibrosis MATIO (Polish CF Association MATIO)).
Press contact: Paweł Wójtowicz: krakow@mukowiscydoza.pl

PORTUGAL - (FEDRA - Federação de Doenças Raras de Portugal ).
Press contact: Paula Simões: assessoria.fedra@hotmail.com

ROMANIA - (Romanian National Alliance for Rare Diseases).
Press contact: Robert Pleticha: robpleticha@hotmail.com

RUSSIAN FEDERATION - (National Association of the organisations of rare diseases "Genetics").
Press contact: Svetlana I. Karimova – President of the National Association "Genetics": nacgenetic@mail.ru

SERBIA - (National Association of Pharmacy Students of Serbia (NAPSer)).
Press contact: Bojan Davinic: office@napser.org

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: estherprigioni@hotmail.com

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: Melissa Hillier: melissa@raredisease.org.uk

USA - (NORD).
Press contact: Mary Dunkle: mdunkle@rarediseases.org