OIFE has recently succeeded in getting accepted for the Fundraising Tools in Facebook and our Vice President Dace immediately decided to use the birthday fundraiser tool. For her birthday she invited friends and family to fundraise to support the projects and the activities of OIFE. And thanks to 24 donations, she managed to raise almost 900 euros for OIFE! We are extremely grateful. Thank you so much to all who contributed! We hope many more people will follow Dace’s example.
No fees to Facebook Facebook does not charge fees for donations to charities. 100% of donations goes directly to OIFE’s bank account.
Tax deductible Donations to OIFE are eligible for tax credits or deductions in Europe. Please contact us for more information!
Do you want to fundraise for OIFE? It’s very easy to create a fundraiser for OIFE on Facebook. You can create a birthday fundraiser or just a general fundraiser to help our cause. How to do it?
1. Go to https://www.facebook.com/fund/OIFEPAGE/ 2. Click “Raise Money“ 3. Choose “Osteogenesis Imperfecta Federation Europe” 4. Choose your goal in your local currency. You can increase the goal several times. 5. Choose the end date of the fundraiser 6. Click „next“ 7. Choose a suitable title for your fundraiser 8. Write an explanation on why you have chosen to raise money for OIFE. The more personal you are, the more people might respond to it. 9. Choose a photo to go with the fundraiser (if you don’t add a personal one, it will use the header photo on OIFE’s Facebook page) 10. Publish it on Facebook!
Friday the 19th the Medical Advisory Board (MAB) of OIFE came together for their 2nd meeting in 2020. The topics included Key4OI and the new rare bone registry EuRR-Bone. In addition to the OIFE MAB, we had invited the OIFE EC, our resource group on registries and Tracy Hart from the OI Foundation. In total 18 people took part.
The agenda included:
Status on Key4OI by Dagmar Mekking
Information on EuRRBone – Natasha Appelman-Dijkstra
Other news from OIFE – Ingunn Westerheim
Standard set of outcome measures
Dagmar Mekking from Care4BrittleBones gave a short introduction about the project Key4OI, which is a standard set of outcome measures for osteogenesis imperfecta. The standard set has been developed through a process involving an international group of experts and focus groups, where children and adults have provided their input from the patient perspective.
Information on EuRR-Bone
Natasha Appelman-Dijkstra, from Leiden University, gave a presentation on the brand new EuRR-Bone registry, while being stuck in traffic. Talk about passion for OI! EuRR-Bone’s aim is to create a high-quality, patient-centered registry for rare bone and mineral conditions including OI in collaboration with the EuRRECa project (European Registries for Rare Endocrine Conditions).
Better treatment & follow up of people with OI
The introductions were followed by questions from the participants and a very constructive discussions which included questions on:
How we can develop better guidelines for OI
How the patients can help the professionals to provide data
How different registries in different countries can work together
How patient organizations and other stakeholder can come together to work for more standardized and regular follow-up of people with OI in all age groups
We will follow up the many important questions and comments in further meetings after the summer holidays.
Thank you to all the people who contributed!
What is Key4OI?
Still not sure about what Key4OI is? Watch the video below, made by Care4BrittleBones which explains how Key4OI could be used as a tool to develop more standardized healthcare for people with OI.
Perhaps not a big surprise, but the OIFE Executive Committee has in collaboration with the local organizers decided to cancel the OIFE Youth Event 2020 that was supposed to take place end of August, because of the Corona virus situation. Our plan is to do the OIFE Youth Event in Poland i 2021 and in Belgium in 2022. We will keep you updated!
Each year all delegates are invited to the Annual General Meeting (AGM) of OIFE, which is normally the only time a year the whole Board comes together. At the AGM the Executive Committee (EC) accounts for OIFE’s activities in the past year, future plans and policies are discussed and members exchange news and ideas.
Our original plan for OIFE AGM 2020 was to meet in sunny Valencia from May 8th to May 10th. But the Corona virus put a stop to that, as it has done to so many other meetings and conferences. But we would not let it stop us from having our annual meeting. The EC therefore organized a two part meeting on Zoom on May 9th instead. Part one included approval of annual reports, budget and elections. And part two included a webinar on new treatments in OI.
People from all continents took part
Anyone from our member organizations can attend the OIFE AGM. In addition, OIFE volunteers, volunteers from other organizations, professionals and other people with an interest in OIFE can be invited.
62 participants attended part one of AGM 2020. 66 people attended the webinar (part 2) on new treatments. What was unique about this year’s event, was the record number of member organizations that were able to attend. We had all the national organizations from Europe except one attending. In addition to European organization and three supporting members, we had representatives from organizations and invited guests from all different continents including Peru, USA, Chile, Ghana, Nigeria, India and Australia. This year we had also invited people from Mereo Biopharma, our Medical Advisory Board as well as contributors from other rare bone communities, including XLH and HPP. Between 70-75 people attended the event in total
Bruno elected as 2nd Vice President
AGM part one included approval of annual reports, budget and elections. All proposals from OIFE EC were approved. We welcome Bruno van Dijck to the EC team, as the new 2nd Vice President of OIFE.
In addition to reports and elections, OIFE president and OIFE’s Communication Manager gave an update on current happenings and news and a summary from the national reports. The last part of OIFE AGM part one was dedicated to a presentation of a new collaboration on a planned global survey between OIFE, the OI Foundation and the company Mereo Biopharma.
Survey on the impact of OI
OIFE president presented the project, which is an initiative from Mereo Biopharma which is formally supported by OIFE and the OI Foundation. The plan is to do a global survey on the impact on OI to:
understand the patient journey better in X & Y country
to understand better what OI means for children and adults beyond fractures
what the economic impact of OI is on people with OI and their families (direct and indirect costs)
how we can measure quality of life in OI in the best possible way
what kind of data we should collect and how
Three representatives from Mereo Biopharma were present to answer questions and comments from the participants. Mereo informed us that a steering committee will be established with members from OIFE, OIF and Mereo Biopharma in addition to 5 medical professionals from US and Europe, including both pediatricians and adult doctors.
Webinar on new treatments in OI
Part two took place on Zoom from 15.00 to 17.00 and included talks about:
– News on BOOSTB4 (Cecilia Götherström)
– News on setrusumab project (Mereo Biopharma)
– Access to treatments for rare bone diseases (Oliver Gardiner & Paul Connor)
The event has received a lot of positive feedback in retrospect and many people were positively surprised how well an event on Zoom could work. 37 people answered the evaluation form and 95% of the participants gave a score of “Very good” or “Excellent”, which means that OIFE AGM 2020 can be considered a success.
The aim with our #wish4OI campaign was to collect the wishes of the OI community to get to know what they wish there could be more knowledge and awareness about in the future about OI. It could be anything from treatments to policy work, from very basic to complicated issues you want to address or would like the OIFE to work more on.
With this post, we would like to send a big thank you to all the people who contributed with their wishes to the #wish4OI campaign. You helped us create an amazing #Wishboneday!
Rare Revolution Magazinegives a voice – and a platform – to patients, industry professionals, clinical and healthcare providers and the patient groups and charities that support over 8000 different rare conditions. Created by BMA award-winning, featured writers and sisters; Nicola Miller and Rebecca Stewart, who identified a huge gap in the industry, Rare Revolution is a space where all of these rare disease parties can come together in one place to all become better informed and cross-promoted, while benefiting from shared experiences and best practice. The slogan on Rare Revolution Magazine is “It’s time to turn the tide and make our collective voices heard.”
Which better opportunity than Wishbone Day to start a collaboration between OIFE and Rare Revolution Magazine? This is what we thought, and we have been lucky to be heard and welcomed by the Rare Revolution Magazine Team who offered OIFE the chance to take over the social media channels of the magazine for one whole day and use their tools to reach out for a greater, and for sure interested audience.
What is Wishbone Day?
Wishbone day is the collective voice of people with OI, talking about OI and the things that matter most to them, in their own way. Wishbone Day draws awareness to the contributions of people with OI, the challenges of living with OI, and the important ways that people can contribute to our journey to live full and happy lives.
In this perspective, OIFE took this opportunity as a perfect fit in the Wishbone Day 2020 communication strategy that aims to collect the wishes of the OI community through our #wish4OI campaign, adding some kind of educational, explanatory activities aimed to raise awareness on OI, on OIFE and on some of the topics that matter the most to the OI community.
For the whole day tomorrow 5th May, several OIFE branded contents and post will be shared by Rare Revolution Magazine according to an editorial plan suggested by OIFE itself. We strongly encourage you to follow Rare Revolution Magazine social media and share what you find interesting for yourself and your OI community
May 6th is Wishbone Day the International Day of OI celebrated all over the world by the OI communities to improve and boost the awareness around OI.
We have seen many incredible ways to celebrate this day, some created by individuals and some guided by National organizations’ initiatives.
As the international umbrella for OI Organizations OIFE has always been watching, enjoying and promoting the many different and creative inputs given all over the world to celebrate this unique day.
This year OIFE decided to get even more involved!
As usual, we have launched a Fb picture Frame we invite you all to use and share. It is easy but really relevant as it will show the yellow ribbon of the Day to all your friends and contacts on social media and help improve the visibility of the day of the OI community.
The first big brand new news is that on 5th May OIFE will take over the social media channels of Rare Revolution Magazine a digital magazine giving a voice to those affected by Rare conditions and the charities that represent and support them. So stay tuned as we will release some brand new contents about OI, OIFE and Wishbone Day on that date.
In addition to this, we have launched an interactive social media-based campaign called #Wish4OI.
The aim is to collect the wishes of the OI community to get to know what they wish there could be more knowledge and awareness about in the future about OI.
It could be anything from treatments to policy work, from very basic to complicated issue you want to address or would like the OIFE to work more on.
How to do get involved?
Very simple…take a photo of yourself with a paper and write on it your #Wish4OI.
You can either share it online tagging or mentioning OIFE and using the hashtag #wish4OI or you can send it to firstname.lastname@example.org.
Our idea is to collect how many wishes as we can and create a video or a poster with them all.
What are you waiting for? Let us know your #wish4OI!!
The exercise lasts approximately 30-45 minutes. Make sure you have light weights/manuals available. If you don’t have weights you can use 2 small water bottles (ca 0,5l). If you don’t have a wheelchair – you can use a normal chair instead.
The title and graphic identity of the Latvia meeting Jean Moitry and I attended in Riga is a reference to the Chinese tale of the three monkeys. One of them doesn’t see, the second doesn’t hear and the third hides his mouth. This is an optimistic message because the meaning of the parable is that if you choose not to listen to evil, not to look at it, nor to repeat negative ideas to others, you are a wise-man/wise-woman.
More literally, when one is a person with OI, one may have in addition to orthopedic problems, issues with one’s sight, or one’s hearing, or with jaw deformities or one’s dental system that may cause pain, teeth fragility all the way to affecting one’s self-esteem especially during teenage years (smile). Behind this humorous and welcoming entry, the rich program Ingunn and OIFE had devised contained arduous scientific material not always easy to apprehend for a neophyte like me, when it comes to all the background knowledge about our pathology. Let’s try to summarize and indicate a few tracks.
Introductory words the organizers were followed by a general presentation of OI by Dr. Antonella Forlino, explaining different ways to classify OI, the Sillence classification and the classification with the 19 different genetic types. Research pertaining to the mutation classification could lead to more specific treatments and follow up in the future.
Day one was first devoted to eye pathologies which can occur due to thinner sclera and cornea and then to dental treatments and jaw function problems pertaining to OI patients suffering in these areas. We learnt that serious vision problems such as glaucoma or cataract seem to affect less than 5% of OI people of any type, and are therefore reported as less prevalent in OI patients than in the average population. Dr Janna Waltimo Siren and Dr. Suken Shah then approached skull base deformities and basilar-invagination which may appear in as much as 25% of the OI population (30% of types III and IV). Concerning dentinogenesis imperfecta (=DI), according to an Eastman Institute study, among 50 patients of all types of pathologies suffering from DI 28% had this condition due to OI. DI mostly affects OI types III and IV, much less type I. In Northern Europe, several studies have been devoted to its various forms notably within the TAKO and the Eastman institutes networks. Dr. Agnes Bloch-Zupan, a pediatric dentist and biologist at the IGBMC Centre of reference on mouth and dental disorders in Strasbourg (France) then spoke of her research within the European program Interreg V RARENET on rare dental diseases, among which OI had been included. That same day we learnt from Dr. Manuel Joaquin de Nova Garcia that the effects of anti-resorptive treatments such as bisphosphonates on the evolution of dentinogenesis have been studied: they seem to be causing dental malocclusions in some patients. Studies about the consequences of such treatments in relation to hearing loss apparently have not yet been made.
On the second day, we were given an overview of the various forms of hearing deficiencies in OI. It is commonly said that about 50% of us will suffer from hearing loss. Within the framework of a Danish study, 60% of examined ears in O.I. patients were affected. A lot was learned about the prevalence of deafness due to transmission failure (middle ear) in comparison with hearing impairment caused by perception defects (i.e. inner ear, cochlea affections). Optimal ways of detecting, treating and following up the various types of deafness in OI, were detailed by audiologist Freya Swinnen.
I noted that there appear to be less studies produced nowadays about “deafness and OI” than in the 1970 to 2000 period. A few existing recent studies however reveal that the most severe hearing losses associated with OI originate not specifically in middle ear — of which the small bones deformations and possible surgical treatments have been explored extensively, as Dr. Pedersen reminded us —, but rather in the inner-ear or in a combination of both conduction and perception problems (i.e. middle and inner-ear deterioration) adding up with age. As far as we know, “fortunately”, very severe malfunctions and this combination factor occur in less than 5% of OI patients.
The causes of mutations and conditions inducing malfunction in the cochlea in some OI patients whilst not in others have not yet been identified. What we know is that, like the middle-ear bones, a fragile cochlea is likely to suffer from micro-fractures and chaotic bone remodeling. As the temporal bone is also prone to demineralization with age, perceptory cells finding themselves in a hostile environment, begin to atrophy. In the case of severe hearing loss — affecting patient’s capacity to understand spoken conversations even while wearing external hearing aids —, one may have recourse to cochlear implant (=CI) provided one’s cochlea hasn’t been obstructed. Implantation consists in the surgical insertion of a silicone electrode carrier in the inner-ear, coupled with a microprocessor implanted under the skin of the head (see Illustration).
As surgeon Gunta Sumeraga, Freya and myself emphasized, it is absolutely indispensable to be examined by a surgeon who already knows OI or similar bone pathologies before making the decision to get an implant. With a cochlea wall as thin as ours, risks of cochlear perforation and meningitis are greater, as well as risks that the facial nerve gets stimulated (in addition to the auditory nerve aimed at) when the electrical processor of the implant is turned on, causing facial paralysis or jerks.
We still have some way to go before a solid body of work exists to improve the quality of life of OI people affected by deafness. Although this may be considered a secondary disability because it appears, in its stronger expression, after the age of 40, deafness should be treated as early as possible, when it is still mild. Regular (possibly annual) audiograms should be performed starting in early childhood and throughout adulthood. It is important also to be prescribed and to wear hearing aids as soon as medium range deafness is diagnosed, as well as to get a professional psychological follow up: these are key factors for avoiding the serious psycho-social damage untreated deafness may cause.
Each section of the Riga program began with patient testimonies that had been carefully and sensitively selected by members of the OIFE board, who read them aloud to us. The conference’s audience of about 80 people consisted primarily of medical professionals and secondly of patients and OI family members of all ages, converging from all over Europe and Russia. Such diversity among the attendees surprised Canadian Pr. Jean-Marc Retrouvey who made a rather arduous presentation on 3D modelizations of cranio-facial characteristics in OI. He expected to have a mostly professional audience! However this is very much the specificity of OIFE: mixing audiences to allow active patients to document themselves whilst providing an opportunity for professionals to meet the people who make their practice meaningful, and not just remain among themselves.
The Riga meetings were successful at that, taking place in a beautiful setting and in a very friendly atmosphere. Thumbs up and a BIG thank you to Ingunn, Taco, Ute, Anna, Dace and her husband for their warm welcome. Many thanks also to Zita for her skillful simultaneous transcription that allowed deaf people such as me to follow the conferences.