WELCOME TO RARE BONE MOBILITY!

A research project on mobility issues of people with rare bone conditions.

Learn how to take part!

#RareBoneMobility

“We want to understand the daily life mobility challenges individuals with rare bone conditions have, how they solve these challenges – and how researchers can use the information to improve people’s mobility.”

The project

What is the project?

A research project on mobility aspects of people with rare bone conditions, using analysis of photos from individuals (Photo Voice) as a method.

What do we need?

We need to collect 200 photos from European individuals with different rare bone conditions. The photos must illustrate daily life mobility issues and will be analyzed through PhotoVoice methodology. Before May 31st our goal is to get photos from all across Europe, with as many rare bone conditions represented.

Who are we looking for?

We are looking for adults (18 years or older) with a rare bone condition living in Europe. There are currently identified more than 400 types of Rare bone conditions.

How will we use the photos?

The photos will be used for research and to illustrate daily-life mobility aspects reported by adults with rare bone conditions: What are the challenges, reasons behind them and ways to solve them. You can give your consent for use of your photos in a social media exhibit to help spreading awareness for the campaign.

Jeanette

There are more than 450 known rare bone conditions. Many are severe and progressive, associated with significant mobility limitations and can affect daily activities. Other conditions have less effect on mobility and some conditions are the cause of invisible disabilities. Unfortunately, few facts are known about daily mobility challenges of people with rare bone conditions. There is a lack of published data, well adapted assistive devices and documented understanding of the unmet needs, for which we use a method called Photovoice.

Expressing ourselves with a photo for example by doing selfies or storylines on Instagram and Facebook, is very conducive and much in line with our visual culture as well as our communication on many social media channels. Visual communication, in contrast to other forms of expression, does not require reading or writing skills and can therefore be applied to all.

The PhotoVoice method enables the documentation of concrete experiences of people with rare bone conditions in several settings (e.g. workplace, home or in a city) and exemplifies how mobility challenges can differ between countries and cultures. Our goal is to use these experiences in the form of photographs as a base for finding potentially new therapeutic interventions.
The aim of this participatory study is to receive an overview of mobility challenges people with rare bone conditions face in their daily routines. Through this data, we hope to learn more about people’s mobility challenges, their causes and solutions people come up with to solve their challenges.

How to take part

To take part in the research project you need to submit your photos through the button below. It is NOT enough to use the hashtag on social media. 

Take 1 – 5 photos altogether
(format must be .jpg, .gif, .odt, .doc or .png)

Your photos can show a challenge, a cause or a solution

You can be part of the photo but it can also be just a place or an object – YOU DECIDE!

Think about a brief comment for every photo you upload

Click on “Submit photos” button below, which lead you to another webpage (with instruction in several languages). It will take just a few minutes.

#RareBoneMobility – help us spread the message! If you want to help us spread awareness about rare bone conditions and the project, you can also post your pictures on Instagram or Facebook using the hasthag #rarebonemobility. But keep in mind, that only photos that have been uploaded through the link on this website can be analysed for research!

Meet the team

We are Denise, Elma, Christina and Olivia. We are master students from FH JOANNEUM, University of Applied Sciences, Austria, tutored by Frank Amort, Ph.D., Associate Prof. for Health Management & Public Health.

Denise
Christina
Elma
Olivia

Watch a video message from the students below! 

The researcher

Mr. Sascha Fink from the University of Graz, Austria is a Human Movement Scientist and he wants to learn more about the mobility of people living with rare bone conditions. Are you living with a rare bone condition in Europe? Please support his PhD project by submitting your photos about mobility.

Watch a video message from Sascha Fink below!

The organizations

The project is supported by the two organizations of Osteogenesis Imperfecta Federation Europe (OIFE) and ANDO Portugal. OIFE is an umbrella for OI-organizations and ANDO Portugal is a national patient organization for people with rare skeletal dysplasias in Portugal. 

Watch a video message from Ingunn Westerheim (OIFE) and Inês Alves (ANDO Portugal) below. 

Do you have questions?

Send us an email to rarebonemobility@gmail.com

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