Poppy Smith is currently Miss Belfast and is using her platform to raise awareness for OI and chosen the BBS as her beauty with a purpose charity.

Poppy told us that she chose the BBS as it is close to her heart and she was inspired by her  little friend Eve.  Poppy wants to use this Miss NI finalist beauty with a purpose opportunity to raise awareness of OI.

We wanted to thank Poppy for all her hard work so far and congratulate her on coming second in this Miss Northern Ireland competition.

 

 

 

 

The BBS are delighted to hear that Rare Disease Ireland are working on Care Pathways for OI. We are pleased to support this and will help contribute to this project in any way.

The priority is to identify people/families living with OI in Ireland that would be willing to review the draft pathway and provide feedback from their lived experience. The commitment is up to each individual, but it would be expected that no more than 5-6 hours over a 3-4 week period would be required.

The tasks may be outlined as follows:
1. Attend zoom meeting to hear background on project and learn what is being asked for. Any questions will be answered.
2. Read draft pathway (5-8 pages) as developed by clinical lead.
3. Add changes, recommendations, thoughts to the draft based upon lived experience of care in Ireland, including need to travel internationally for care as appropriate.
4. Return edited document to NRDO for review.
5. Follow-up meeting to review edited draft, as needed.

Following incorporation of lived experience changes, the draft pathway will be reviewed and amended as required by health professionals. Final version will be available to patient reps before going through approval processes with management/leadership within the HSE. Timing of this approval process is to be confirmed.

If you are interested please contact  – Vicky McGrath at advocacy@rdi.ie.

The BBS are delighted to have an article published in the Society of Radiographers digital magazine, Synergy. CEO Patricia Osborne took the opportunity to discuss what radiographers need to know about Osteogenesis Imperfecta.

You can read the article here: Synergy Article

The article is another step in the BBS raising awareness of OI in the medical field.  The magazine has a readership of 33,500.

 

 

We are delighted to announce that Scotmid has awarded the Brittle Bone Society a £500 Community Grant. This generous award will cover costs of the BBS Hospital Kids Packs. Thank you Scotmid!

 

Open Access Government Article

 

CEO of Brittle Bone Society Patricia Osborne, revisits aspects of the condition and shares what is known around current medical research and treatments. You can read the full article here.

 

OI 2022 Sheffield  – 14th International Conference on Osteogenesis Imperfecta

 

The Brittle Bone Society , along with Osteogenesis Imperfecta Foundation and Osteogenesis Imperfecta Federation Europe are delighted to offer a number of awards to healthcare professionals and researchers working in lower middle-income countries to attend this scientific conference to be held in Sheffield, UK from the 30th Aug to 2nd Sep with all costs covered.

This international OI conference brings together scientists and clinicians from a wide range of disciplines, presenting updates on developments in scientific research, medical and surgical treatment options and discussions around topics such as rehabilitation, quality of life, pain, mental health and service development.

If you are a researcher and wish to apply please find out more information here.

NOMINATIONS NOW CLOSED

This Christmas, nominate your child for a BBS Christmas Selection Box!

Due to the success of last year’s Christmas Boxes, we are helping Ollie send out more this year. To nominate a child, fill out the form here.

Deadline for nominations is the 30th November.

Posted on Sep 8, 2021
 

The Brittle Bone Society were delighted to receive a request to provide an article about Osteogenesis Imperfecta for the September edition of Open Access Government online publication.

Chief Executive, Patricia Osborne talks about the condition, research and the importance of multi disciplinary services.

Click here to read the Full Article.

Posted on Sep 29, 2021
 

“Turning the talk into action: We must have robust, fit for purpose and funded solutions now” Chief Executive, Patricia Osborne contributed to an article for Rare Revolution Magazine about provision of services and support for rare conditions.
 
You can read the full article by clicking here.

Posted on Jul 28, 2021

 

Q: Name

Gareth Cumming, BA(Hons), CIMA Adv DIP MA

Q: Board Role designation (Trustee or Chairman, Secretary etc):

A: Trustee

Q: Your Relationship to BBS (your link/connection)

A: OI Type 3

Q: Have you ever been a Trustee for any other charity or similar? How many years have you been serving on the Board for BBS?

A: I have never been a trustee for any other charity. I have been a trustee since 2017

Q: Was there a moment when you decided that you wanted to support the work of the Brittle Bone Society or perhaps you were co-opted?

A: My family has always had close involvement in the BBS. I have attended almost every AGM and local conferences since I was born and have been involved in many fundraising and cheque presentation events. My dad was a trustee when I was growing up and I always believed that I would like to become a trustee when I was old enough and may even step into the position of treasurer when I finally qualify as an accountant.

Q: What do you enjoy most about serving on the Board?

A: I really enjoy making sure that the BBS is heading in the right direction with the best interests of people with OI. Also as the youngest trustee I have also enjoyed help shape the engagement of the younger members of the BBS through the vOIce events.

Q: What is the biggest challenge in your role?

A: I believe that most people will say that the biggest challenge in recent times has been the COVID crisis and the lockdowns. It was absolutely heart breaking to me to be part of the trustees who have decided to cancel 2 physical AGM/conferences, however it was made in the best interest of the delegates and has provided opportunities for people who haven’t or cannot physically attend, to attend virtually.

Q: How important do you see the role of the Brittle Bone Society in helping to raise awareness around OI? And including participation around research or anything else you feel pertinent.

A: The BBS is incredibly important to raise awareness around OI. There is still a lot of unknowns that surround OI both medically and in the general population so the hard work and support of the BBS has definitely helped it to improve, even in my life time.

Q: How would you like to see provisions for healthcare change in the future for people with rare bone conditions and specifically for OI?

A: There is a lot of healthcare provision for people with OI in childhood however there seems to be a lot less support for adults with OI. Therefore, better support in this area is incredibly important

Q: If there anything coming out of the Covid Pandemic that you feel will be learned positively to improve the quality of life for people with OI and their families?

A: I think one major positive that has come out of the pandemic is the popularity of video calling/conferencing. We have learned from last year’s AGM and vOIce events that new people attend due to not having to travel so far, costs involved from traveling or with physical injuries.

I believe that the BBS should have more virtual conferences and events and that going forward and only keep the main annual conferences as a physical event

Q: Do you have any unusual hobbies or interests that you would like to tell us about?

A: I have many hobbies including Baking, Pub Quizzing, Musicals, Swimming and Archery. However during lockdown I have learned a new hobby: Knitting. I have already had commissions from friends to make them scarfs and hats

Subscribe to our mailing list

Sign up now to be the first to know about special events