CONFERENCES

OIF CONFERENCE ONLINE

In place of the in-person OIF National Conference this year, the Osteogenesis Imperfecta Foundation in the USA will host a Virtual Conference on July 10-12, 2020. The Virtual OIF Conference will provide live online versions of some of the most popular informational and social sessions at the biennial OIF National Conference. People from all countries who are interested can attend – this includes both people with OI, their families and professionals. You don’t have to be a member of the OIF.

Topics include:

  • Genetics
  • Mild OI
  • Management of pain & fatigue
  • Women’s Health
  • OI Surgery – children and adults
  • Dental issues

OIF Virtual Conference is free of charge, but you must register for each session you would like to attend. More information and link to register can be found here.

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ADVOCACY

OIFE AT PATIENT ENGAGEMENT FORUM

This week representatives from OIFE attended two different online sessions connected to the Patient Engagement Open Forum, which is a series of virtual educational sessions on patient engagement. The Forum is hosted by PARADIGM, PFMD and EUPATI aims to provide a holistic perspective of patient engagement, the landscape and actors, and foster collaboration and co-creation while breaking down fragmentation and silos that are often present in patient engagement work.

Anyone can join

There will be six other sessions from July to November in 2020 and anyone who’s interested in patient engagement can attend.

Topics range from tools and recommendations for effective patient engagement, methods for monitoring and evaluation of impact and outcomes in patient engagement activities, and fair market compensation for patient input to interactive sessions on assessing good practices in patient engagement and more. This includes both patient representatives, professionals and industry representatives.

Session on patient experience in regulatory processes

OIFE president Ingunn attended the opening session on June 25th including the parallel session on patient experience data in regulatory processes where the objectives were:

  • Learn more about ongoing patient engagement efforts to inform regulatory decision making
  • Explore challenges and emerging good practices around the use of patient experience data in regulatory submissions
  • Prioritize Patient Experience Data (PED) challenges and emerging good practices in regulatory communication
  • Understand what areas can help move the needle internally for organizations and externally in collaboration with patient organizations, biopharma and regulators

Session on fair market value

On June 26th two representatives from OIFE attended the parallel session hosted by the National Health Council in the USA called “Patient engagement fair-market value calculator toolbox”. The toolbox provides different tools for patient engagement including a calculator, which can be used to estimate the value of the contributions from patient representatives and patient organizations when working with the industry. One of the tools the National Health Council has created is a toolbox to support sponsor-patient engagement. These tools include a publicly accessible, online fair-market value calculator, patient-friendly contract templates, compensation and contracting principles for engaging with patients, and other tools. The OI Foundation are members of the NHC and Tracy Hart (CEO of OIF) has been part of the development process of the toolbox.

 

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MEDICAL

Women’s health & OI

WOMEN’S HEALTH AT OIF CONFERENCE
Did you know that Women’s health is one of the topics which will be covered at the upcoming online conference of the Osteogenesis Imperfecta Foundation? The speaker is Dr. Deborah Krakow, MD – Professor and Chair, Obstetrics and Gynecology, UCLA.

The session is designed specifically for women over 18 who have OI, but professionals and other people from all countries, can attend. Click here to register.

PREGNANCY & OI
Dr. Krakow will also give a talk called “Management of Pregnancy & Delivery in the Patient with a Skeletal Disorder” at the TeleECHO session on July 2nd 21.00 CET. See more information here: https://oif.org/research/echo/

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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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CONFERENCES

Rare Bone Disease Workshop

The Bone Research Society (BRS) is one of the largest national scientific societies in Europe dedicated to clinical and basic research into mineralised tissues, and is the oldest such society in the world. Meetings are held annually, attracting a wide audience from throughout the UK and beyond. The presentations are traditionally balanced between clinical and laboratory studies. The participation of young scientists and clinicians is actively encouraged.

BRS2020 has moved online from July 6th – 8th and will focus on oral communications, posters, the Industry satellite symposia and the Rare Bone Disease Workshop.

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OIFE

OIFE MAB-meeting on Key4OI & EuRR-Bone

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.

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ADVOCACY

Data strategy for the ERNs

EuRR-Bone is launched!

The registry EuRR-Bone was launched this week, and will cover rare bone and mineral conditions the European Reference Network on Rare Endocrine Conditions (Endo-ERN) as well as the European Reference Network on Rare Bone Disorders (ERN BOND). EuRR-Bone will be of service to all patients, health care professionals and researchers involved in the care of people with rare bone and mineral conditions.

OIFE attended EURORDIS webinar on data strategy for the ERNs

Having more knowledge on registries and data sharing is therefore very important for the OIFE these days. Today we were represented at a webinar called “A data strategy for the European Reference Networks” (ERNs), which included the following talks:

  • EURORDIS proposals to develop a data strategy for ERNs
  • The European Health Data Space
  • ERNs data needs, progress until today and challenges around registries, data collection and data sharing across ERNs.
  • The perspective of ERNs hospital managers on data needs, opportunities and challenges.

EURORDIS publication on data strategy

The webinar was connected to a new publication from EURORDIS called “No time to lose: Building a data strategy for the European Reference Networks“. The aim of the publication is to inform the debate on a data strategy for the ERNs. The paper outlines EURORDIS’ proposal to co-create a comprehensive ERN data strategy that matches the ambition of the Networks, enabling them to address some of the most pressing public health needs of people living with a rare disease or complex condition.

The ERNs represent a unique opportunity for the innovative use of health data across borders to improve the lives of people living with a rare disease. At the same time, the large majority of people living with a rare disease are willing to share their health data to advance care and research, as long as this is done in a secure manner and they remain in control of the data sharing process. An integral data strategy should therefore be one of the building blocks of an ERN structure that aims to improve the life of people living with a rare disease through knowledge and data sharing across countries and diseases.

See also this useful glossary to understand more about data sharing and patient data.

 

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EDUCATIONAL

EURORDIS DIGITAL SCHOOL

Today OIFE’s Communication Manager Anna Rossi attended EURORDIS Digital School, which takes place online this year. She has signed up for the entire Digital School 2020, which consists of webinars and eLearning and aims to empower rare disease patient advocates to use digital communication tools to improve the strategic outreach and community-building capacities of their organizations.

The training objectives range from understanding digital landscapes to learning about creating empowered communities, building effective channels and reaching the right people. The trainers include social and digital media experts as well as representatives of patient organizations with invaluable experience in digital media.

Anyone can join the different parts, but only people to attend all the parts get a certificate.

See also free online workshops about social media organized by the charity Findacure!

 

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