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Skeletal Dysplasias Alliance

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The Skeletal Dysplasia Alliance stands at the forefront of advocating for individuals with Achondroplasia and other Skeletal Dysplasias with Dwarfism (ASDD) across Europe. In the context of global advancements in recognizing the rights of people with disabilities, the alliance emphasizes the unique needs of the ASDD community that have been historically overlooked.[1]

With a focus on collaboration and mutual learning, the alliance addresses the common challenges faced by individuals with ASDD throughout Europe. Despite progress in EU disability policies, there remains a critical gap in acknowledging and addressing the specific needs of this stigmatized community.

This consensus declaration serves as a collective call to action, urging the EU to listen to the voice of people with ASDD and implement real, lasting solutions. As the alliance amplifies its advocacy efforts, it envisions a 'social Europe' that establishes common standards, fosters increased cooperation, and brings about tangible change for individuals with ASDD. In this historic time shaping the future of Social Europe, the alliance aims to ensure that the unique needs of the ASDD community are heard and addressed. [2][3]

History

In 2020, seven organizations representing individuals with achondroplasia and other skeletal dysplasias from various European countries (Bulgaria, Finland, France, Netherlands, Slovakia, Spain, and the UK) decided to collaborate on an advocacy project.

Their objective is to promote the often overlooked discussion surrounding the needs and challenges of individuals with short stature, both in EU policies and at the national level. With this aim, they opted to develop a Consensus Paper addressing the situation of ASDD (Achondroplasia and Skeletal Dysplasias) in Europe and proposing political actions for improvement.

The Consensus Paper served as a cornerstone for advocacy on skeletal dysplasias, as it analyzed, for the first time, 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 Consensus at an 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 coordinated, active efforts of ASDD organizations are deemed essential. [4][5]

Skeletal Dysplasia

File:Achondroplasia (Dwarfism) woman playing badminton.jpg
Achondroplasia (Skeletal Dysplasia) woman playing badminton

SD, or Skeletal Dysplasias, encompasses 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. [6]

Among these, 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.[7]

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 centimeters, while females typically measure 124 centimeters. [8]

Sister Associations

Sources

  1. ^ https://www.myskeletaldysplasia.org.uk/
  2. ^ https://rpp-group.com/wp-content/uploads/2022/12/P80399251370-0621_ASDD_Brochure_Consensus-Declaration_Din_A4_11-10-21.pdf
  3. ^ https://rarediseases.org/organizations/european-skeletal-dysplasia-network/
  4. ^ https://www.lobbyfacts.eu/datacard/skeletal-dysplasias-alliance?rid=426256050834-50
  5. ^ https://skeletaldysplasias.org/about-sd-alliance/
  6. ^ https://www.annualreviews.org/doi/10.1146/annurev-genom-090314-045904
  7. ^ https://www.aboutkidshealth.ca/Article?contentid=4135&language=English
  8. ^ https://skeletaldysplasias.org/about-skeletal-dysplasias/
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