EVENTS

OIFE AGM on Zoom – a success

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.

Participants at OIFE AGM part 1 (participants of OIFE AGM part 2 in heading)

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

Bruno Van Dijck

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)
– Registries & patient data (Lena Lande Wekre)
Click here to download the agenda.

 

OIFE AGM on Zoom a success 

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.

 

READ MORE
STORIES

The art of being unhappy

Can we be unhappy or do we keep on with that unbreakable spirit which people with OI all seem to have? Why do we want to be so happy? Think about this with me for a while!

Imagine: you were a 2 year old toddler and your mother or father asks you to draw something simple like a tree on a piece of paper? Right, you grab a pencil and start to move the pencil over the paper making scratches while you look your mother or father into the eyes waiting for their affirmation… 

How did your mother or father react? Of course she or he put on the high pitched voice and produced some words like: “Wow, what a nice tree you just designed! That’s amazing!”. Nothing on the piece of paper has the shape of a tree… 

But that’s what happened right? 

We do this all the time towards toddlers because it makes them happy. And we as humans want to make others happy. Even if what they do is not good or correct. 

Happiness is imprinted from the moment we start to communicate with each other. Since we are born: Baby don’t cry, be happy!  We believe that when we feel happy, we feel better. These days, everybody has a pressure to be very happy. We are all on social media, seeing how everyone else is so happy. 

But to be honest, if I look around me, I see a lot of the opposite. Especially in the age group between 15 and 35. The ones who have spent their youth on social media. A lot of friends my age and even a lot younger are suffering from alcohol and drug addictions, depressions and burn-out. And it starts a lot earlier than it used to. 

We all want so much. We want good grades in school, and good scores on the sports team, and the boy- or girlfriend who is the most popular and perfect parties!  

When we graduate and look for a job, we want the best job we can get. With all the extra bonuses we can get, like a car, a phone and a laptop. We want flexible hours, so we can arrive and leave work when we can. And it goes on. To get that job, we need to search for a long time, and I see that young people just stay home waiting for that job to come along. Instead of doing something else which is not that perfect, we can’t handle the fact that we would be a little unhappy with that temporary job. 

Maybe, for young people with OI it’s different? Because we have our relatively severe disability, we can’t expect things to go so smoothly. Like finding the best girl- or boyfriend, or the best job we can get? We are resilient enough to fight against things that doesn’t go so well in our lives. 

Are we…? 

In 2016 I was in Orlando, Florida attending the national American OI-conference. I was there with around 350 others with OI. I’ll never forget the first evening when we did a “walk” in the hotel complex we stayed in. For me it was very weird to go out and shout about how great it was to have OI. I was a little bit shocked because of the enormous amount of other people with OI and the extreme positive approach towards OI.

But to be honest. After 3 days being there, hearing all those positive ideas about having OI, I started to believe it a bit. And I understood that it is a lot easier to cope if you can regard OI as a kind of a blessing. However weird that might sound… 

So yes, it is possible that we can “get up again” more easily after a negative life experience than people without OI. Because we have learnt how to do it since an early age. 

But when you have to do this many times during your lifetime, sometimes it all becomes too much. And then we have to be aware and allow ourselves and others to feel unhappy. It is not a blessing to have OI after fracture number 142 or so. OI can really be a pain in the ass, or let’s say in the bone… 

Maybe we need to learn the art of being unhappy in order to better understand our own feelings…?  

Written by Stephanie Claeys, OIFE Youth Coordinator

READ MORE
CONFERENCES

The Voice of People with OI

Do you want help us establish the voice of people with OI?

OI Community Sounding Board

The organizers of the conference Quality of Life 4 OI in Amsterdam are assembling an OI Community Sounding board (webinar) to test the key messages from the OI community, which will be shared during the Amsterdam conference. This is a “once off” initiative related to the Conference Quality of Life 4 OI. The duration of the webinar will be 90 minutes.

Who can take part?

People with OI and parents of children with OI from all countries are invited to take part in the webinar as long as they can communicate in English. Professionals may join, although they will not be able to vote. You don’t have to be a participant in the conference to join. All you need is a genuine interest in moving healthcare and research for OI forward.

When will the webinar take place?

Saturday, 19 October 2019 at 15 CET (for example Amsterdam), 9 EST (for example Washington), 21 CST (for example Beijing).

How to join?

Registration upfront is required: REGISTER HERE

READ MORE
CONFERENCES

Symposium on stem cells & OI in India

Written by Eva Åström, member of OIFE Medical Advisory Board

OI symposium in Vellore India

The Centre for Stem Cell Research at the Christian Medical Collage in Vellore, India arranged a two day symposium on OI and stem cell treatment on the 6th – 7th of February 2019. The aim was to provide a platform for scientist and physicians working in this field of research to come together and discuss the recent developments for better diagnosis and management of OI. Invited speakers from Australia, India, Sweden, UK and USA were participating in person, by video link or recorded video lecture followed by skype discussions.

“Translational research in OI & Cell Therapy”

The main focus for the first day was “Translational research in OI & Cell Therapy” with the main topics: prenatal diagnosis (Suresh), clinical assessment and management (Åström), radiological assessment (Gibikote), update on OI classification (Sillence), molecular diagnosis (Shah), surgical management (Fernandez), medical management (Åström/Sillence), Quality of Life, physiotherapy (Hill), cell therapy (Horwitz) fetal Mesenchymal Stem Cells (MSC) therapy (Götherström), BOOST2B collaboration (Madhuri) and role of DXA (Paul).

“Current Regulatory and Ethical Requirements for Conducting Cell Therapy Based Clinical Trials/Research”

The theme for day 2 was “Current Regulatory and Ethical Requirements for Conducting Cell Therapy Based Clinical Trials/Research”. Main topics were the need of dialogue between regulators and investigators and industry (Srivavtava), current challenges in regulations of production, distributing end export/import (Hedenskog), regulations in India (Gopta) and Europe (Franzén), regulatory changes in India (Nair), manufacture and quality assurance of MSC (Walther-Jallow), requirements for reconstitution (Goos), graft manipulations for allogenic SC-transplantation (Mathews), requirements for a new cell-scaffold product trial in India and clinical trials using them (John/Madhuri) and finally clinical concerns and regulatory strategies for implementation (Walther-Jallow).

During two intense but extremely well-organised days in beautiful surroundings and an outdoor temperature of 35 degrees we connected and learned from each other.

Eva Åström (OIFE Medical Advisory Board member): Front row, second from right

READ MORE
CONFERENCES

Patient Outcomes

Many people & projects are talking about patient outcomes & outcome measures these days. Today at the #iccbh2019 there was a poster presentation from Australia which reported that 1782 different outcome measures were used in 19 different trials about OI. This big variety makes it challenging to compare research across borders and between projects.

We need standards & guidelines. Come to Amsterdam in November and help us develop some recommendations on this! Dr. Frank Rauch (photo) is the programme chair of the Quality of Life 4 OI-conference and will be there together with many others experts in the field, like Antonella Forlino (photo).

Register at: www.qualityoflife4oi.org

READ MORE
EVENTS

Call for abstracts

Are you a clinician or researcher interested in OI? Then the conference Quality of Life 4 OI is waiting to hear from you.

Key dates to keep in mind:

  • 1 June 2019, 23:59 CET: Abstract submission deadline
  • 1 July 2019: Notifications to authors

Submitting your abstract provides you with an opportunity to:

  • gain visibility for your current research or clinical work
  • get support and feedback from others
  • raise your profile among colleagues internationally and from multiple disciplines
  • widen your network to open up new opportunities for future collaborations
  • have your abstract published in the conference abstract book (and potentially online, to be confirmed)
  • be eligible for a grants and awards. More information will come available in April
  • and make an impact on Quality of Life for OI, but sharing your knowledge and valuable experience!

The following grants will be available based on (potential) impact on Quality of life for OI and will be determined before 1 July:

  • one or several free conference tickets (depending on funding availability)
  • the opportunity to run a 45 minutes workshop on the topic of your abstract

During the conference delegates choose the winner of the “Care4BrittleBones Award” which will enable a presentation of 15 minutes on the final day and a special surprise.

If you have any questions in relation to the abstract process, please contact the organizers!

Read more about the conference here: http://www.qualityoflife4oi.org/

 

READ MORE
CONFERENCES

Quality of Life 4 OI

Make sure you mark the date November 22nd – 25th 2019, when the international conference QualityofLife4OI will take place in Amsterdam. The conference is an initative from Care4Brittle Bones and is hosted by a coalition of OI-organizations (Care4BB, OIFE and OIF), Medical professionals (ERN – BOND) and the Industry. It is coordinated by Foundation Care4BrittleBones.

The Conference provides a platform to engage about clinical practice and research for people affected by OI. What is the expert opinion on good clinical practice in diagnostics, clinical assessment and treatment of OI today? What do people with OI need most to have good quality of life? What research needs are currently unmet? How can the efficacy of a trial of clinical treatment be evaluated with metrics that make sense for regulatory authorities as well as people with OI? Both qualitative and quantitative aspects will be discussed in an interactive and international setting.

The Conference aims to bring together professionals and people from the OI-community:

  • clinicians of all disciplines supporting OI,
  • researchers working on OI-related projects
  • anyone from the OI-community with an interest in research beyond the personal level
  • representatives from industry supporting OI
  • other stakeholders interested in OI

It will provide an opportunity to meet, learn, network and get inspired to improve quality of life for people with OI across borders, professions and boundaries.

Interested to hear more and potentially attend?
Subscribe to the conference cewsletter via this link: https://bit.ly/2ON4A6i

READ MORE
EVENTS

Nigeria new OIFE-member

At the Annual Meeting of OIFE in August 2018, we got a pleasant surprise – a membership application from the Nigerian OI-organization. The Board voted and we were happy to welcome OIF Nigeria as our new associate member, the second one from the African continent.

The OI Foundation Nigeria, founded by Tarela Aghanti in March 2016, is the sole organization set up to address the needs of people born with Osteogenesis Imperfecta (OI) in Nigeria and are working with other African and international OI-organizations.

“Our charity is working towards achieving a society in which the needs of people  living with Osteogenesis Imperfecta (brittle bone disease) in Nigeria and around the world are understood, respected and fully met.

We will work towards improving the quality of life for people diagnosed with OI in the country by providing advice, raising awareness and providing information. We also provide treatment, surgeries, wheelchairs and mobility equipment needed for comfortable and independent lives with good quality.”

OIF Nigeria is now in contact with children and their families in Nigeria identified with OI in Lagos State, Enugu, Abuja and Oyo State, Porth Court, Delta State and we believe there are more in other states. We are presently in communication with these families, connecting OI patients together, sharing experience, lifting each other up, encouraging and supporting each other. We are connecting patients with OI professionals and connecting interested OI health professionals in Nigeria with international OI experts. We are also providing Zoledronic acid medication for people affected

Currently, OIF Nigeria is working really hard towards changing the beliefs of individuals as this condition and disability as a whole is spiritualized and can be associated with witchcraft, Evil Spirit and shame. In some parts of Nigeria, it could be said that a disabled child is cursed, which leads to many children being abandoned by their families, which is one of the biggest challenges that we face in our country.

OI also known as brittle bone condition is a rare condition. This is why we are committed to raising awareness on OI to help change the mindset, understanding and beliefs of our people so these children could be accepted, loved and cared for, as this will also help with inclusion in our society. We believe awareness is the key to change, so we go on air (TV, Radio, social media etc) through which we have been contacted for support and help by parents whose children are having symptoms and features of OI.

In the future we would love to create and raise more OI awareness in remote villages in Nigeria to find more OI patients and families, to be able to support them with treatments, equipment and surgeries to help improve quality of life.

From the 16th to 22nd of November we are having a five days distribution of wheelchairs & mobility aids, for both oi children and adults and people with physically challenges. This in order to support, promote independence and improve the quality of life each person can live.

OIF Nigeria National Annual Conference is on the 17th November 2018. We hope to see as many people there as possible, both from Nigeria, but also from other African countries if they are interested.

OIF Nigeria can be found online at www.oifnigeria.com and on Facebook.

READ MORE
Translate »