Dwarfism: Understanding its Impact & the Need for Awareness

Dwarfism, is a medical condition defined by short stature, typically characterized as an adult height of 140 cm or shorter. This condition is frequently attributed to genetic or medical factors. The most common form is achondroplasia, a genetic disorder affecting bone growth. There are over 500 different conditions associated with dwarfism.

Dwarfism can be caused by a variety of factors, including:

Genetic Factors: Many cases of dwarfism are caused by specific genetic mutations and can be inherited.
Hormonal Disorders: Conditions such as growth hormone deficiency can also contribute to dwarfism.
Skeletal Dysplasias: Disorders of bone growth and development can impact height and body proportions.
Other factors: These include malnutrition, organic causes, endocrine diseases, metabolic disorders, psychological factors, and iatrogenic causes.

Individuals with dwarfism encounter significant social challenges and serious associated health conditions, although many are able to lead full and active lives.

Investment and interest in addressing this condition vary across the European Union, revealing no clear correlation between cultural and economic factors. This indicates that the underlying issue may be more related to a lack of education and awareness rather than a shortfall in resources.

COMMUNITY IMPACT - BLOG

eurordis webinar: The Impact of Rare Conditions on Self-ID

Advocacy at the National Level

UN Convention on the Rights of Persons with Disabilities

The VN-verdrag inzake de rechten van personen met een handicap, formally known as the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD), was adopted by the UN General Assembly in December 2006. The Netherlands signed the convention in 2007 and ratified it in 2016.

More information

AN OPEN LETTER TO THE NETHERLANDS HOUSE OF REPRESENTATIVES

ENGLISH TRANSLATION

This policy brief emphasises the urgency of recognising and addressing the unique challenges faced by people with dwarfism in the Netherlands. It calls for immediate action to ensure their voices are heard, their rights are upheld and they receive the support necessary to live fulfilling lives.

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EEN OPEN BRIEF AAN DE TWEEDE KAMER: NEDERLANDS

NEDERLANDSTALIGE VERSIE

Deze beleidsbrief benadrukt de urgentie van het aanpakken van de unieke uitdagingen voor mensen met dwerggroei in Nederland. Het roept op tot onmiddellijke actie om hun stem te versterken, hun rechten te beschermen, en de steun te bieden die ze nodig hebben om een leven met bestaansrecht te leiden.

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Mental health is far too often sidelined and still even considered taboo, even in the best of circumstances. For those living with a rare condition, mental health frequently takes an even further backseat—or is completely overlooked.That’s why we are proud to highlight the groundbreaking work being done by Empowered By Us in parallel with EURORDIS-Rare Diseases Europe to elevate this critical issue and ensure it receives the attention it desperately needs, especially for the dwarfism community.

Click below to watch the impactful webinar, where Sophie H. Turner delivered a compelling keynote speech sharing her personal experiences and the urgent need to prioritize mental health in the context of rare conditions. This was followed by an engaging panel discussion featuring members of the rare condition community, who also shared their insights on navigating the often-blurred lines between their identities and the conditions they live with.

INTERNATIONAL DWARFISM AWARENESS DAY: 2024

Policy & Perspectives: Advancing the Dialogue on Dwarfism Awareness

This year, Empowered By Us (EBU) had the privilege of hosting an intimate luncheon to highlight the unique and complex challenges faced by individuals with dwarfism.

During this gathering, we marked a significant milestone: the launch of a call to action for their inclusion in the Netherlands.

Inclusion is not just an aspiration; it is an urgent necessity. By addressing these challenges, we also recognize and celebrate the invaluable contributions that individuals with dwarfism make to society, enriching our communities with diverse perspectives and talents.

EBU invites you to join us in driving lasting change, ensuring that every voice is heard and valued. We encourage you to endorse our call to action and become part of this essential movement for inclusion.

ENDORSE NOW

In the Media

Raising Awareness About Achondroplasia

Rare Disease Day Campaign: Inclusivity in Focus

Article: Thibault en Thomas hebben de groeistoornis achondroplasie ‘Soms maken mensen ongevraagd foto’s van ons’
Publication: &C Media & Topic Media
Published: April ed., 2024 - Netherlands
Read the Full Article HERE

*This article was funded by BioMarin and features insights from Thibault Krommenhoek, who was asked to share how he faces day-to-day life. This initiative supports our organization's efforts to raise awareness about the experiences of individuals living with dwarfism in the Netherlands.

Rare Disease Day Campaign: Inclusivity in Focus

Article: Niet over het hoofd zien: ook met achondroplasie meedoen in de maatschappij
Publication: De Telegraaf, Planet Health & Media Planet
Published: February 28, 2024 - Netherlands
Read the Full Article HERE

*This article was funded by BioMarin and features insights from Sophie Turner, who was interviewed for a Rare Disease Day campaign. This initiative supports our organization's efforts to raise awareness about the experiences of individuals living with dwarfism in the Netherlands.

Standardized clothing sizes for little people

Article: Gestandaardiseerde kledingmaten voor kleine mensen
Publication: De Vriendschap (BVKM), pagina 8-10
Published: March 2022 - Netherlands
Read the Full Article HERE

Redefining Fashion for Inclusivity

Standardized clothing sizes for little people

Article: AUF AUGENHOEHE x TOMMY HILFIGER SOCIAL INNOVATION CHALLENGE
Publication: Tommy Hilfiger, PVH & Auf Augenhohe
Published: February 16, 2019 - Worldwide
Read the Full Article HERE

FOLLOW the conversation ON LINKEDIN

Dwarfism: Understanding its Impact & the Need for Awareness

COMMUNITY IMPACT - BLOG

eurordis webinar: The Impact of Rare Conditions on Self-ID

Advocacy at the National Level

UN Convention on the Rights of Persons with Disabilities

AN OPEN LETTER TO THE NETHERLANDS HOUSE OF REPRESENTATIVES

EEN OPEN BRIEF AAN DE TWEEDE KAMER: NEDERLANDS

INTERNATIONAL DWARFISM AWARENESS DAY: 2024

Policy & Perspectives: Advancing the Dialogue on Dwarfism Awareness

In the Media

Raising Awareness About Achondroplasia

Rare Disease Day Campaign: Inclusivity in Focus

Rare Disease Day Campaign: Inclusivity in Focus

Rare Disease Day Campaign: Inclusivity in Focus

Rare Disease Day Campaign: Inclusivity in Focus

Rare Disease Day Campaign: Inclusivity in Focus

Standardized clothing sizes for little people

Standardized clothing sizes for little people

Standardized clothing sizes for little people

Redefining Fashion for Inclusivity

Standardized clothing sizes for little people

Standardized clothing sizes for little people

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