MEMBERS

New OIFE Member: FOICH CHILE

Interview with Andrea Medina, FOICH President

Who are you and what is your relationship to OI?
I am Andrea Medina, founder and president of the board of the Fundación de Osteogénesis Imperfecta Chile, FOICH. I have OI for this my interest is generating actions that allow other people with OI to develop in their lives, just as I have. I am a journalist and I have a master’s degree in communication from the University of Santiago de Chile.

How many people with OI does Chile have?
According to our register, we have 113 people with OI in the country. However, we estimate that there are more than 250 people.

Can you tell us about the situation for people with OI in Chile?
People with OI in Chile live a very different reality depending on their access to health, their economic situation and their place of residence. People who live in Santiago, the capital of the country, have more access to medical benefits and social inclusion, compared to people who live in other regions of the country.

Can you tell us about your organization?
FOICH was founded on December 18, 2017 as a non-profit organization. But we started working almost two years before. It was founded by seven people, of whom five have OI and the other two people are direct relatives of people with OI.

Our main objective is to generate actions for the social inclusion of people with OI, through collaborative work with family, professionals and other national and international organizations.

Our management is focused on the directory, which determines the actions and initiatives that are carried out, as well as the planning of the foundation.

How many members do you have? How do you recruit more members?
We have registered 113 people with OI, who participate in our actions together with their families. To incorporate more people, we ask that they sign up for our register, which has response options for people with OI and without OI.

What are the biggest challenges for your organization?
Our first and greatest challenge is to know the number of people with OI in Chile, to know where they live and what their reality is. Chile does not have official figures of people with OI from government organizations, so it is very important to be able to establish this number in order to trace the next steps.

Another important challenge is to create links with the doctors and institutions that care for people with OI, because the treatments differ from where they live and, in addition, the health services do not have a unified protocol for the application of bisphosphonate in people with OI. There are also problems of access to certain medical supplies, such as nails for operations.

Do you have projects you want to tell us about? What is your biggest success?
Our greatest success is knowing that there are at least 113 people with OI in Chile thanks to our Cadastre (database). This is a permanent initiative and we will not stop having it until we know of all the existing cases in the country.

The current reality of Chile has changed our projects lately. First the social outbreak (politicial protests) of October 2019 affected us in our plans to meet and now the Coronavirus Covid-19 is making us rethink our plans for this 2020.

What are your plans for the future?
We want to strengthen ties with doctors and health professionals to help us improve the quality of life of people with OI, as well as we want to take the necessary steps to incorporate OI treatment into the benefits of the Ministry of Health, to increase access to these and decrease their costs.

In addition, we have a big job to make OI visible in the country, so that the rest of the community becomes aware of our condition. Last but not least, we must continue to strengthen our FOICH community, in order to have greater ties between us in the whole country.

 

HEARING LOSS PROJECT IN CHILE
We are happy to inform you that our new OIFE-member Fundación de Osteogénesis Imperfeta are currently part of a project to investigate prevalence of hearing loss in people with OI in Chile. The first project on hearing loss & OI we have heard about for quite some years now.

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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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MEMBERS

New OIFE member – Ukraine

Who are you and what is your relationship to OI?
My name is Karina and I am mother to 8 year old girl with OI type 3. We live in Rovno, which is located in Western Ukraine.

Can you tell us a few words about Ukraine?
Ukraine is a country in Eastern Europe. It has a population of about 42.5 million, making it the 32nd most populated country in the world. It is the second-largest country in Europe. Capital and biggest city is Kiev. Ukrainian is the official language and its alphabet is Cyrillic. Country borders with Russia, Belarus, Poland, Hungary, Moldova, Slovakia and Romania.

Can you tell us about your organization?
The organization “Ukrainian Organization Crystal People” (UOCP) was created on June 2014. So far we have been in touch with 200 persons with OI. These are our goals and activities:
• Gathering people with OI and their families into Association and database compilation;
• Our organization is funded by private donors, which helps to cover at least some expenses, that patients with OI have (medical support, surgeries, rehabilitation and genetic tests)
• Informative support for members of the Association, exchange of experience with OI related matters, and in situations where people with OI and their families feel lonely;
• Informing public and health care responsible government institutions about needs and problems of people with OI and their families;
• Collecting information and publication in mass media about OI;
• Medical database compilation of doctors and medical professionals who have experience in treatment of patients with OI

How do you recruit members/promote the organization?
We have a website & a Facebook group and information about the organization has been sent out to main hospitals, genetic doctors, rehabilitation doctors and other health care professionals in Ukraine.

What are your biggest challenges?
Unfortunately there are a lot of challenges for patients with OI. Currently the biggest challenges for Ukrainian patients with OI are:
– the absence of diagnostics (genetic analysis)
– the absence of protocol for OI surgery and treatment, approved by the government and Ministry of health.
– too little professionals for kids/adult health care, who know about European protocol for OI surgery and treatment.
– expenses, that patients with OI have (medical support, surgeries, rehabilitation and genetic tests).

What are your plans for the future?
Our goal is to have protocols for OI surgery and treatment, approved by the government and Ministry of health and free medical treatment for patients with OI. To collaborate more with doctor associations in Ukraine and other countries to get OI more visible among doctors in order to get the best health care as possible. To share information about OI and help those who are having OI and their families

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MEDICAL

Psychosocial aspects in OI

In 2019 Care4BrittleBones would like to build up a network to foster knowledge exchange around psychosocial aspects of OI. The network will be led by Dr. Kara Ayers (photo) from Cincinnati children’s hospital, USA and Dr. Claire Hill from Sheffield’s children hospital, UK. The purpose of the network is to explore key topics of shared interest, foster scientific research and best practice exchange in this area with the overall aim to improve quality of life for people with OI.

If you are a professional working with people with OI (children or adults) in relation to psychosocial topics and interested to share your experience and learn from others, please sign up to the community to be kept informed about their upcoming meetings and any educational activities. This professional network is open to people from all disciplines including allied health professionals. Sign up here: https://bit.ly/2RsatYs

Questions? Please contact dagmar.mekking@care4brittlebones.org

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MEMBERS

“The Transformation” – Russian Youth Project

In December 2018 Russian Charitable Foundation “Brittle People” started its the most outstanding online-project “The Transformation”, focused on children and teenagers with OI professional skill and psychological health.

Inspiring “The Transformation” program success, Fund’s psychologist Aleksandr Kharitonov decided to run another one – “The Course of Success”. It has been started in September 2018. Both projects are financially supported by the Presidential Grants Foundation.

“The Transformation” was a one-year project based on weekly training in groups and has two breaks for spring and summer camps. Children watched webinars in ZOOM platform, made homework and participated in discussions of personal development, studying themselves and other people, place in the world and their future profession. Motivation speakers talked to children about their experience, profession and unlimited opportunities of life. With the help of “The Transformation” project, participants became more socially active, learned to show their leadership skills and saw how many “fragile” children live in Russia. Most importantly, they realized that they are not alone. In common 62 children from 34 federal subjects of Russia participated in “Transformation” program, and 74 – in “The Course of Success”.

The main goal of “The Course of Success” program was to make children‘s career guidance, to develop their knowledge and skills in one of professional areas that they choose for themselves. Children were offered to choose professions in three areas: “Creativity”, “Business” and “Digital”. After finishing the program, each participant will present his own project.

Traditionally, all online training supports by live-meetings in spring and summer camps for OI-children and their families. As a result of the project, Charitable Foundation “Brittle People” expects that children with Osteogenesis Imperfecta will improve the basic skills and competencies, will get career-oriented (according to their capabilities and age) project, and become more adaptive to the modern labor market conditions.

These projects are very important steps towards making children with brittle bones independent and self-confident members of the society. Also an unplanned effect was that children‘s intellectual and emotional improvements led to the physical one. Some of project’s participants, who previously used a wheelchair not only because of real necessity but mostly because of the feeling that they walk weirdly, gradually began to walk.

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Girl with woman in south africaMEMBERS

New OIFE member: Brittle Bones South Africa

By Rageema Livingstone, chair of Brittle Bones South Africa

 Who are you and what is your relationship to OI?

My relationship with OI started nearly 12 years ago when my daughter was born with the condition. She is diagnosed as type 3 and currently wheelchair bound as she is experiencing bone thinning to the extent that her left femur is nearly completely gone. At birth she was misdiagnosed as type 2 and I was told she would pass away. After being diagnosed through the Red Cross as type 3 I became a sort of counsellor to new parents with OI kids this sparked the idea of starting a support group with has grown into a NPO: https://www.facebook.com/brittlebonessa/

 How many people with OI does South Africa have?

At this stage I cannot give you an answer to how many OI people is in SA as hospitals cannot give me statistics as no one has been keeping a record and I am in the process of getting information from government hospitals so I can compile my own statistics.

Can you tell us about the situation for people with OI in SA?

Not many people  are aware of the condition. My daughter attends the Red Cross Hospital here however most doctors have not dealt with the condition so they do not easily recognize it. There is currently only research into genetics as far as I am aware. Currently a case study is being done on my daughter by dentists as they have never dealt with dentogenesis before at government hospitals. I  have not done research into private dentists as it is very costly and majority of patients cannot afford it.

Can you tell us about your organization? When was it founded? How is it managed?

My organisation has been around for about 5 years however it was only officially registered through government last year. I manage most of the day to day queries as well as setting up events and fundraisers. I have help through my family and friends. It is a struggle to get people involved sometimes, as most people expect a salary or money to be allocated to them if they assist in fundraising, which makes it very difficult.

How many members do you have? How do you recruit more members?

Currently we have over 100 members in our support group. We do posts on social media and through events and advertising on local media such as newspapers and radio stations we have managed to get into contact with more members.

What are the biggest challenge for your organization?

Our biggest challenge is funding which enables us to provide wheelchairs and medical equipment to families with OI as well as day to day costs of running the organisation. Another challenge is lack of education on the condition as members have many questions that doctors cannot always provide us with.

Do you have projects you want to tell us about? What is your biggest success?

I have lots of projects which I am working on, such as providing our patients with special personalised blankets. One of the local orthopaedic hospitals is close to my heart as my daughter had her rod put in there and I have regular drives to provide the hospital and patients with items they may need. In the past year we have helped 3 children with wheelchairs and I am currently busy with raising funds for another little girl to receive her chair. We have also assisted with families that could not meet the yearly fee of special needs school which is a bit costly here. I work with my daughter’s school in providing equipment to learners such as kaye walkers, splints and wheelchairs.

What are your plans for the future?

My future plans is to establish a better quality of life for OI in SA and Africa as a whole by helping to educating families and making medical professionals aware of this condition. Through projects I am working on I would like to create employment for special needs parents struggling and not able to go out and work.

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