Support & Information

This pages lists links to non-profit organizations, institutions or websites that offer relevant medical information and / or social, educational and overall support for achondroplasia and other genetic conditions. Links are organized by country and will be updated as frequently as possible.


Argentina

This link takes you to the Argentinian guidelines for medical care of achondroplasia (in Spanish)

http://www.garrahan.gov.ar/PDFS/gap_historico/GAP-2013-Acondroplasia.pdf





Brasil

This is the Brazilian network dedicated to help doctors and families to diagnose skeletal dysplasias (in Portuguese)

Este link leva à rede brasileira criada para auxiliar no diagnóstico de displasias esqueléticas

http://ocd.med.br/






This link takes you to the list of Clinical Genetic services recognized by the Brazilian Society of Medical Genetics (in Portuguese)

Este link leva à lista dos serviços de Genética Médica reconhecidos pela Sociedade Brasileira de Genética Médica

http://www.sbgm.org.br/servicos.asp





Europe

EURORDIS is an European organization for Rare Diseases


http://www.eurordis.org/pt-pt
Multilingual









ESDN is the European network to help doctors and families to diagnose skeletal dysplasias

http://www.esdn.org/eug/Home





This is the link to ORPHANET, another major European organization for the care of rare diseases

http://www.orpha.net/consor/cgi-bin/index.php
Multilingual







France

This is the link to the French Organization for Rare Diseases
 
http://www.alliance-maladies-rares.org/








International

Rare Disease Day is an international initiative to raise awareness and care for rare diseases.

http://www.rarediseaseday.org/

ISDS is the Medical/Scientific Society that gathers most of the doctors and investigators interested in skeletal dysplasias

http://www.isds.ch/




Italy

This link takes you to AISAC, the Italian association for Achondroplasia

http://www.aisac.it/











Portugal

Rarissimas is a very active Portuguese organization working for health and social care of Rare Diseases including skeletal dysplasias

http://www.rarissimas.pt/index.php 





Spain

This is the link to Fundación Alpe, one of the world most active patient-oriented organizations for achondroplasia, based in Gijón, Asturias

http://www.fundacionalpe.org/index.php








FEDER es la organización Española para Enfermidades Raras








Sweden

This link takes you to the Swedish organization devoted to support rare diseases

http://www.socialstyrelsen.se/rarediseases/achondroplasia






Switzerland

This is the link for one of the world top skeletal dysplasias' expert groups, headed by Dr. Andrea Superti-Furga, based in Lausanne

http://www.skeldys.org/


UK

This is the link to the Restricted Growth Association, an organization that provides support to people with dwarfism

http://www.restrictedgrowth.co.uk/ 

United States

This is the link to Little People of America (LPA), one of the world largest associations to support the many forms of skeletal dysplasias 


http://lpamrs.memberclicks.net/








Growing Stronger is a non-profit organization created by parents and devoted to expand the research of skeletal dysplasias

http://www.growingstronger.org/





This is the link to Johns Hopkins' Greenberg Center for Skeletal Dysplasias in Baltimore, MD, one of the best renowned reference sites for the diagnosis and care of skeletal dysplasias in US

https://igm.jhmi.edu/content/greenberg-center-skeletal-dysplasias-welcome





Dr. Dror Paley is one of the main orthopedists performing limb lengthening. He is based in Florida, US

http://www.lengthening.us/index.html 






The International Center for Limb Lengthening, located in Baltimore, is also a top reference center for limb lengthening

http://www.lifebridgehealth.org/RIAO/InternationalCenterforLimbLengthening2.aspx












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