OIFE

OIFE & FACEBOOK DONATIONS

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!

Dace used a photo of herself and her daughter in the garden to encourage people to donate to OIFE.
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EVENTS

OIFE Youth Night

Saturday 13th of June 2020 there will be an informal chat session for people with OI (age 18-35) & friends from all over the world on Zoom! You don’t want to miss this. Will you join us?

Questions? Send an email to youth@oife.org

Register here before Saturday: https://bit.ly/37iiwfh

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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.

 

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OIFE

In Memory of Ida

Ida MännistöWe struggle to find the words to announce the death of OIFE’s 2nd Vice President Ida Männistö (30) from Finland. Ida passed away in her own home on October 19th 2019.

Ida was curious, smart, fearless, engaged and never afraid of new challenges. She lived life to the fullest and we feel so very sad that she is not around us anymore.

We send our deepest condolences to Ida’s family and friends in Finland and all over the world. Rest in peace Ida!

You will be missed.

 

If you want to leave a message of condolence, you can post a comment on OIFE’s Facebook-post below.

 

 

 

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MEMBERS

OIFE member China Dolls

Oliver Semler

The Chinese organization China Dolls became an associate member of OIFE in December 2017. Since then we have been learning about the organization and the different activities they have. During spring 2019 we were very happy and honored to be invited to the 6th National Conference for People with OI in Yantai Shandong, China that takes place from August 3rd – August 6th 2019. It would have been a dream come true, but unfortunately nobody from the Executive Committee of OIFE was able to go.

Fortunately we were able to send dr. Oliver Semler who is the chair of OIFE’s Medical Advisory Board as our representative. He’s both representing OIFE, but also contributing with his talks from a professional perspective. We’re looking forward to his travel report.

In the meantime, you can read an interview with the director of China Dolls – center for rare disorders, that we did some time ago. The interview is done by OIFE secretary Stefanie Wagner.

Who are you and what is your relationship to OI?
I am Zhou Shuang, the director of China-dolls center for rare disorders. I don’t have OI myself, but I have worked in the organization for more than five years.

How many people with OI does China have?
There are approximately one hundred thousand people with OI in China according to the incidence rate of one in 10,000 -15000 people.

Can you tell us about the situation for people with OI in China?
People with OI in China face a lot of challenges such as financial problems, lack of treatment, lack of social inclusion and obstacles when it comes to education and employment.

Regarding treatment for instance, there are very few hospitals and doctors that can give correct treatments to OI patients. A lot of patients had experienced wrong diagnosis, wrong treatments or lack of treatment. And all of these problems leads to serious deformities, high disability rate and high financial burden.

Can you tell us about your organization?
China-Dolls Center for Rare Disorders (CCRD), formerly known as China-Dolls Care and Support Association, was founded by individuals with Osteogenesis Imperfecta (OI) and various rare disorders in May of 2008. CCRD was registered under Beijing Civil Affairs Bureau in 2011. Jinan China-Dolls Center for Rare Disorders was founded and registered in 2015. Currently, CCRD has 2 offices in Beijing and Jinan, Shandong.

As a non-profit and non-government organization, CCRD works with and for people with OI on local medical promotion, medical aid, peer mutual support by empowerment, policy advocacy and public engagement. We aim to raise public awareness of OI, to eliminate discrimination and prejudices, to secure equal rights of people with OI on healthcare, education, employment and other areas, and to promote related policies to benefit people with OI.

China Dolls Vision & Mission:
We work together with and for people with OI and their families, through peer supports, multi stakeholder engagement, OI community awareness raising, public education, medical research, multidisciplinary treatment promotion, health and education policy advocacy. Our vision is an equal, inclusive and barrier-free society.

You celebrated the 10th anniversary of China Dolls in 2019. Please tell us about this event!
Inadvertently, China-Dolls Center for Rare Disorders has gone through more a decade, the establishment of the Illness Challenge Foundation has been nearly three years. So we held the 10th anniversary of the event of China-Dolls Center for Rare Disorders in 2019. More than 400 people who were OI people, volunteers, partners, media and lots of friends from various backgrounds enjoyed this evening. Special guests gave fantastic performances, keynote speeches helped listeners know CCRD deeper, and the charity auction showed people’s great support.

Together, we maximize the capabilities and possibilities to help a considerable numbers of people. With so many people’s help, we boost our confidence to channel more support to the rare disease community.

In the video below you can see a video about China Dolls national conferences.

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MEMBERS

New OIFE member Ghana

We are happy to announce that the Annual General Meeting has voted in favor of accepting OIF GHANA as a new associate member of OIFE. We now have 35 member organizations in our umbrella.

Osteogenesis Imperfecta Foundation Ghana was established in May 2017 and is led by chair Justina Yiadom-Boakye.

In the article below you can read about the recent happening where Justina and her daughter met the wife of the President in Ghana. Way to go & welcome to the international OIFE-network and OI-community!

https://www.oifghana.org/special-ayeyis-wish-of-meeting-first-lady-fulfilled/

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CONFERENCES

See, Hear, Smile! in Riga

From Friday 14th of June to Saturday 15th, Riga, Latvia was the place to be for the OI community. On Friday, the sun was shining, temperatures were high, people in the streets wore summer clothes and highly-needed sunglasses, stopping every now and then to appreciate the beauty of the city or some refreshments at a café’s terrasse…

All the ingredients for a perfect trip were gathered. However, while the typically Baltic charm of Riga alone is an excellent reason to book a flight to the Latvian capital city, it is a for a totally different purpose that people came from all over the world to the Riga Tallink Hotel. In the lobby of the hotel, you hear English, Swedish or Norwegian among other languages; you see people greeting each other with hugs and kisses; you see the hotel’s staff preparing a conference room with the help of several OIFE and LOIB volunteers. In other words, you would be correct to guess that something is about to happen…

What is actually happening is the See, Hear, Smile Topical meeting, the first OI meeting organized in the Baltic states, and the people happily talking and greeting each other in the lobby are a mix of patient representatives, OI experts, professionals and volunteers, impatiently waiting for the conference to begin. Together they are more than 80 and come from 22 different countries.

Participants of topical meeting See, Hear, Smile!This year, the chosen topics of the conference are dental, hearing, vision and craniofacial issues of OI, which appears to be particularly interesting, as these issues tend to be less frequently discussed in comparison to strictly bone-related matters. For Rafael Barão, an ophthalmologist resident in Lisbon who discussed ocular changes in OI in a Portuguese population during his presentation on Friday, the conference is a great opportunity to move slightly away from the bones and focus on equally important – tho often less investigated – aspects of OI.

Bente L. Langdahl, an endocrinologist from Aarhus (Denmark) who addressed eyes and OI findings from a Danish study, goes in the same way and even confessed being slightly surprised that there ‘are still big areas where we do not know a lot’. Hand in hand, and this won’t be a surprise for anyone, everybody seems to agree that the topics have been carefully and rightfully chosen.

At 9am, the opening session begins with a welcoming speech by Kristofer Andersson, Dace Liepina, and Ingunn Westerheim. The program of Friday focuses first on teeth and jaws. As it will be the case for the following sessions, anonymous patient testimonies serve as introductions to specific challenges: personal issues, experience with professionals and care, questions they might have, and so on. The richly illustrated lectures that follow address topics ranging from clinical perspectives, prosthodontics treatments, to multidisciplinary approaches to oral health and function in rare diseases among other matters. Questions are often being raised, showing great interest from participants – always a sign of successful and interesting presentations.

Beside lectures, coffee breaks and lunches are also particularly appreciated, as it is the occasion for attendees to casually meet each other and discuss their own perspectives and experience. Thadé Goderie for instance, an ENT surgeon/otologist at VUmc (Amsterdam), stresses that this is a unique opportunity to interact with patients and patient representatives, as well as with colleagues from other disciplines, and to discuss current best practices that take place in other countries. The afternoon sessions then address craniofacial issues and eyes related to OI, ending the day with the presentation of posters realized by Jasmine May Cachia Mintoff, Nuria Gallardo-López, and Andrea Martín-Vacas on different studies being conducted on dental or craniofacial topics.

At 7pm, after having been given some time to relax and eventually freshen up, participants were invited to gather for a welcoming reception and a networking dinner. The atmosphere is undoubtedly friendly and naturally leads to people top open up easily to each other again. As suggested by Ingunn Westerheim, the goal here is not to sit with the people you already know. Rather, it is the opportunity to make new connections, and so guests were invited to enjoy a glass of champagne and a three-course meal dinner with people they perhaps would not have met in other circumstances. In a way, in addition to the various lectures that were held in the conference room, one could say that this – the social side of the See, Hear, Smile meeting – is one of the main strengths of such an event; and it makes no doubt that everybody enjoyed this opportunity.

On Saturday, at 9am sharp and after a well-deserved resting time, participants were introduced to the sessions related to hearing challenges in OI. With presentations related to topics as varied as findings from a Danish study, treatments and follow-up methods, surgery or hearing aids, the conference addressed the hearing matters comprehensively, with once again many questions being raised and interest being vividly shown.

Shorter than the day before, the session was also the opportunity for attendees to discover CastPrint, a Latvian company, and its impressive and promising 3D printing technology. Indeed, fractures being especially prevalent among OI patients, CastPrint introduced attendees to its cutting-edge technology consisting of 3D-printed fixation solutions, which by the way happen to be eco-friendly on top of being particularly innovative. Shortly before 2pm, time for goodbyes arrived. After a last presentation by Armaana Ahmad and a closing statement, attendees were invited to grab a to-go lunch carefully prepared by the hotel. Many of them took time to discuss some final thoughts on the conference and the topics that were addressed before either going to the airport to catch their flight or, for the luckiest ones, to have a walk in the city to eventually discover the beautiful Riga under the same bright sun as the one that was shining when they arrived.

Written by: Julien Delaye – OIFE Intern

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EVENTS

OIFE AGM 2019

OIFE’s 26th Annual General Meeting (AGM) will be held in Riga, Latvia from June 15th – 16th following the topical meeting See, Hear, Smile! If you plan to take part in both the topical meeting and the OIFE AGM, you need to register for BOTH events separately.

Time OIFE AGM:
June 15th 14.30 – June 16th 14.00

Place:
Riga Tallink Hotel

Each year all OIFE delegates are invited to the Annual General Meeting (AGM). Any member from our 34 member organizations can attend the AGM, but only the official delegates from a paying member organization are allowed to vote. OIFE volunteers, volunteers from other organizations, professionals and other people with an interest in OIFE can be invited.

At the AGM the Executive Committee of OIFE accounts for OIFE’s activities in the past year. Future plans and policies are discussed and members exhange news and ideas.

More information & registration can be found here.

 

 

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