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institutional event with the support of five representatives from the EU Parliament and the
European Commission. The presentation underscored the necessity of political and social dialogue to reduce and overcome the challenges faced by affected individuals. To this end, the alliance believes that coordinated, active efforts of ASDD organizations are essential.
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declaration presented by the alliance serves as a call to action, urging the
European Union to listen to the voices of people with ASDD and implement real, lasting solutions. The alliance envisions a 'social Europe' that establishes common standards, fosters increased cooperation, and brings about tangible change for individuals with ASDD.
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The consensus paper served as a cornerstone for advocacy on skeletal dysplasias, analyzing the comprehensive needs of these conditions, including issues related to stigma, health, social protection, and barriers in education and employment. In
November 2021, the SD group presented the statement at an
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In 2020, seven organizations representing individuals with achondroplasia and other skeletal dysplasias from various
European countries decided to collaborate on an advocacy project. Their objective is to promote the often overlooked discussion surrounding the needs and challenges of individuals with
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The alliance collaborates with various organizations to address the common challenges faced by individuals with ASDD in Europe. Despite progress in EU disability policies, there is still an observed gap in acknowledging and addressing the specific needs of this stigmatized community. The consensus
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While most cases are evident at birth, some receive a diagnosis during early infancy. Newborns with achondroplasia often exhibit distinct limb proportions, including variations in head, thorax, and hand sizes. In adulthood, the average height for males with achondroplasia is 131 cm, while females
61:, encompass over 450 rare conditions linked to cartilage and bone disorders, resulting in varying degrees of short stature. While each specific skeletal dysplasia is individually uncommon, collectively, their incidence is nearly 1 in 5000.
32:(ASDD) across Europe. In the context of global advancements in recognizing the rights of people with disabilities, the alliance emphasizes that the unique needs of the ASDD community that have historically been overlooked.
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Among these conditions, achondroplasia is the most prevalent, occurring at an approximate rate of 1 in 20,000-30,000 live births. Currently, around 250,000 individuals worldwide are affected by this variant.
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short stature, both in EU policies and at the national level. They developed a
Consensus Paper addressing the situation of ASDD in Europe and proposing political actions for improvement.
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is an organization dedicated to advocating for individuals with conditions such as
191:"European Skeletal Dysplasia Network – National Organization for Rare Disorders"
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162:"Foundation Exploring Skeletal Dysplasia Together – F.E.S.T."
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Geister, Krista A.; Camper, Sally A. (August 24, 2015).
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Bundesverband Kleinwüchsige
Menschen und ihre Familien
209:"Skeletal Dysplasias Alliance | lobbyfacts"
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250:Annual Review of Genomics and Human Genetics
116:Association des Personnes de Petite Taille
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246:"Advances in Skeletal Dysplasia Genetics"
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346:Lists of organizations based in Europe
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88:Belangenvereniging van Kleine Mensen
262:10.1146/annurev-genom-090314-045904
178:ASDD Brochure Consensus Declaration
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336:Disability rights organizations
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57:Skeletal dysplasias (SD), or
108:Fundación Alpe Acondroplasia
312:"About Skeletal Dysplasias"
18:Skeletal Dysplasia Alliance
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341:Human rights-related lists
69:typically measure 124 cm.
124:Little People of Bulgaria
316:skeletaldysplasias.org
298:www.aboutkidshealth.ca
231:skeletaldysplasias.org
59:osteochondrodysplasias
227:"About SD Alliance"
73:Sister associations
26:skeletal dysplasias
197:. August 11, 2022.
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294:"AboutKidsHealth"
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165:F.E.S.T
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40:History
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