Propose a new Event or Activity

We are grassroots community with the shared aim to improve Quality of Life of everyone with OI and other rare bone conditions. We share our knowledge and learn from each other all the time.

If you want to organise an event or volunteer for one of our roles, please submit your proposal here. We will connect with you withing 3 days upon submission.

It is possible to edit your response, if you are using the same digital device.

Feel free to contact us in case of any questions.

The team behind CARE4BONES and QualityofLife Conference

info@care4bones.org

info@qualityoflife4oi.org

+31 - 652096361

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* 1. Name Speaker / Moderator

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* 2. Mobile phone / Whatsapp

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* 3. Email

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* 4. Type of Activity

Webinar

Session at the Quality of Life 4 OI Conference

Mentoring Circle

Network Work Leader (ca. 3-5 hours of volunteer work per month)

Country Leader (8-10 hours of volunteer work per month)

Please provide additional information as required

Question Title

* 5. To which Theme does your Event link?
(Feel free to select several Networks, who link to your topic)

Adult Health

Paediatric Health

Adult Health 50+

Parenting child with OI

Adulescents

Women's Health with OI (including pregnancy with OI)

Physical Wellbeing ("everyday fitness") and Rehabilitation

Emotional Wellbeing

Medical Treatment options

Orthopaedic treatment options

Participating in Society (school, study, work, volunteering etc)

Skill building (eg social media, vlogging, coding, team building)

Other (please specify)

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* 6. Title of the event (max 50 characters incl spaces)
(Make the title absolutely clear regarding the focus of the event. Short = good)

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* 7. Name of speaker, job title, company (max. 60 characters incl. spaces)
If you have several speakers, please list them all in the same way.

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* 8. Content Description (max 800 characters incl spaces)

Example:
During this webinar, we will explore critical aspects of adult health for individuals with Osteogenesis Imperfecta (OI). Our expert panel will discuss essential topics such as managing bone health, addressing chronic pain, and the impact of aging on joint and muscle function. You'll gain insight into advanced treatments, physical therapy techniques, and strategies to maintain mobility and independence. Additionally, we will cover the importance of mental health, cardiovascular care, and lifestyle adjustments for people with OI. Whether you are living with OI or caring for someone who is, this session will provide practical tools and valuable knowledge to enhance long-term health and well-being.

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* 9. Key Take aways (List of 3-4 bullet points)

Example:

The webinar will enable you to:

Manage bone health and chronic pain in adults with OI.

Learn advanced treatments and mobility strategies.

Address mental health and cardiovascular care.

Apply lifestyle tips for long-term well-being with OI.

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* 10. Format

Examples:
- A webinar of 60 minutes with presentation by XYZ followed by a facilitated discussion.
- A panel discussion of 4 expert speakers during Quality of Life 4 OI Conference. The audience can submit questions and join the discussion.

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* 11. Bio's of all speakers (max. 600 characters including spaces per speaker)

Examples:
Person with Rare Bone condition: Alex Thompson: Alex Thompson has lived with Osteogenesis Imperfecta (OI) for over 30 years and has become a passionate advocate for raising awareness and improving quality of life for individuals with rare bone disorders. Despite the challenges of OI, Alex pursued a career in accessibility and disability advocacy, working with organizations like the National Disability Association and Rare Diseases International. He has led workshops on navigating life with OI, focusing on mobility, mental health, and independent living. In 2018, Alex launched his blog, Life with OI, where he shares personal experiences and resources for others living with the condition. Alex is also a frequent speaker at conferences, inspiring others with his message of resilience and empowerment.
LinkedIn: <include link>
Blog: <include link>

Healthcare provider: Dr. Emma Johnson: With over 20 years of experience in healthcare, Dr. Emma Johnson has dedicated her career to improving patient outcomes for individuals with chronic and rare conditions. She began her medical career as a general practitioner, later specializing in genetic disorders and musculoskeletal diseases, including Osteogenesis Imperfecta (OI). Dr. Johnson spent 12 years as the Director of Clinical Services at St. Mary's Hospital, where she implemented advanced care protocols for rare bone disorders. After leaving St. Mary's, she founded her own clinic, HealthConnect, focusing on holistic care for adults with complex health needs. She has worked extensively with organizations like the European Rare Diseases Network, and regularly speaks at international conferences on patient-centered care for rare conditions.
LinkedIn: <include link>
Clinic Website: <include link>

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* 12. Picture of speaker(s)

Color picture (not black and white), Portrait shape. For use on Social Media.

PNG, JPG, JPEG file types only.

Choose File

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* 13. Picture of speaker(s)

Color picture (not black and white), Portrait shape. For use on Social Media.

PNG, JPG, JPEG file types only.

Choose File

Question Title

* 14. Picture of speaker(s)

Color picture (not black and white), Portrait shape. For use on Social Media.

PNG, JPG, JPEG file types only.

Choose File

Question Title

* 15. Picture of speaker(s)

Color picture (not black and white), Portrait shape. For use on Social Media.

PNG, JPG, JPEG file types only.

Choose File

Question Title

* 16. Timing: Proposed dates and times
Usually a webinar is 60 minutes and is organised at 15 - 16 CET to allow everyone around the globe to attend. This not a requirement though and you can deviate from this as required.
Always make sure at least 2 weeks are left to promote the event.
Please provide at least 2 different slots.

Examples:
- Webinar of 60 minutes, 3, 4 or 5 March 2025, Between 15 and 17h.
- F2F event of 3 hours, 2, 5, 8 or 10 December 2024, between 9 and 12 CET

Propose a new Event or Activity

Question Title

* 1. Name Speaker / Moderator

Question Title

* 2. Mobile phone / Whatsapp

Question Title

* 3. Email

Question Title

* 4. Type of Activity

Question Title

* 5. To which Theme does your Event link?
(Feel free to select several Networks, who link to your topic)

Question Title

* 6. Title of the event (max 50 characters incl spaces)
(Make the title absolutely clear regarding the focus of the event. Short = good)

Question Title

* 7. Name of speaker, job title, company (max. 60 characters incl. spaces)
If you have several speakers, please list them all in the same way.

Question Title

Question Title

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* 10. Format

Examples:
- A webinar of 60 minutes with presentation by XYZ followed by a facilitated discussion.
- A panel discussion of 4 expert speakers during Quality of Life 4 OI Conference. The audience can submit questions and join the discussion.

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* 12. Picture of speaker(s)

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* 13. Picture of speaker(s)

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* 14. Picture of speaker(s)

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* 15. Picture of speaker(s)

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* 17. Please add your logo here to display in relation to your event

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* 18. Anything else that you want us to know

Propose a new Event or Activity

Question Title

* 1. Name Speaker / Moderator

Question Title

* 2. Mobile phone / Whatsapp

Question Title

* 3. Email

Question Title

* 4. Type of Activity

Question Title

* 5. To which Theme does your Event link?(Feel free to select several Networks, who link to your topic)

Question Title

* 6. Title of the event (max 50 characters incl spaces)(Make the title absolutely clear regarding the focus of the event. Short = good)

Question Title

* 7. Name of speaker, job title, company (max. 60 characters incl. spaces)If you have several speakers, please list them all in the same way.

Question Title

Question Title

* 9. Key Take aways (List of 3-4 bullet points)Example: The webinar will enable you to: Manage bone health and chronic pain in adults with OI. Learn advanced treatments and mobility strategies. Address mental health and cardiovascular care. Apply lifestyle tips for long-term well-being with OI.

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* 10. FormatExamples:- A webinar of 60 minutes with presentation by XYZ followed by a facilitated discussion.- A panel discussion of 4 expert speakers during Quality of Life 4 OI Conference. The audience can submit questions and join the discussion.

Question Title

Question Title

* 12. Picture of speaker(s)

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* 13. Picture of speaker(s)

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* 14. Picture of speaker(s)

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* 15. Picture of speaker(s)

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* 17. Please add your logo here to display in relation to your event

Question Title

* 18. Anything else that you want us to know

* 5. To which Theme does your Event link?
(Feel free to select several Networks, who link to your topic)

* 6. Title of the event (max 50 characters incl spaces)
(Make the title absolutely clear regarding the focus of the event. Short = good)

* 7. Name of speaker, job title, company (max. 60 characters incl. spaces)
If you have several speakers, please list them all in the same way.

* 10. Format

Examples:
- A webinar of 60 minutes with presentation by XYZ followed by a facilitated discussion.
- A panel discussion of 4 expert speakers during Quality of Life 4 OI Conference. The audience can submit questions and join the discussion.