You are invited to join the "Basics of OIAdults Health" Project (Phase 2).

About the project:
Most Adults with OI don’t have access to Expert Centers and face a critical information gap. Most global research focuses on children. Some good resources for Adults have been developed but they are not always applicable in different healthcare systems.

We work together with experts around the world – professionals and people with OI – to develop practical tools and materials supporting Adult Health with OI. Building on the important work of OIF, OIFE, BBS and others: We continue to fill the big gap in the years to come. We are working with everyone committed to the Quality of Life of Adults with OI.

Phase 1 of the OI Adult Health project brought 40 experts from 24 countries together to produce 116 consensus statements on adult OI health.

Now, in Phase 2, we are building on what is there and are developing practical tools and materials to further close the gap for adults with OI. This work is volunteer-driven, unbranded, and grounded in science, expert opinion, and real community experience, with everything published free forever on a dedicated website.


Why participate?
1. You will learn a lot about something that is relevant for you: Health for adults with OI.
2. Your expertise and input are important. You are part of a global project supporting adults with OI, who don't have access to an expertise center.
3. You will get to know other people are also driven by making a positive difference.


If you'd like to be part of this, please register your interest below.

If you have any questions, don't hesitate to ask us.

The Steering Committee of the Adult Health Project

Kassim Javaid / Dagmar Mekking & Team
info@care4brittlebones.org
T+31 - 652096361

Question Title

1. Your name (Required.)

Question Title

3. Mobile number (Required.)

Question Title

4. Country (Required.)

Question Title

5. Background (Required.)

Question Title

6. My role in this project (select all that apply) (Required.)

Question Title

7. I am interested in the following areas

  1 - Not interested at all 2 - A bit interested 3 - Interested 4 - Very interested 5 - Most interested
Diagnosis of OI (types of OI, approach to diagnosis)
Fractures & joints guidance
Women's health with OI
Lifestyle: Nutrition, Weight, other lifestyle
Fitness
Emotional Wellbeing & Mental Health
Medical treatment option
Living with OI at older age
OI type indicator IT tool
Global list of Experts
Dealing with Invisible OI
Real life stories (videos)
Book project (contribute to an educational story about life with OI)
Creative projects

Question Title

8. Other feedback and comments

T