“We feel informed, motivated and supported!”

Background

Through our activities the last couple of years, we have realized that our member organizations are struggling more and more with various challenges. These include knowledge of and strategies concerning communication, fundraising, advocacy, recruitment of new members and board members. It was the view of the OIFE Board that there was a real and increasing risk that many of our members were not educated and equipped enough to fill their role as national patient advocacy groups. The awareness and understanding of different aspects of research & development, HTA and drug development was also way too low in many countries. In several groups there was also a lack of advocacy skills, motivation, experience, resources and volunteers with time and dedication – which added to the complexity and challenges of our member organizations.

The project Stronger Together & the Valencia Conference

Because of these challenges, the OIFE Board came up with a project called Stronger Together. In 2024 we have focused on how we can help, support and motivate our member organizations. One of the activities was a capacity building conference in Valencia, Spain. From September 5 – 8, 2024 we brought together decision makers (both elected members and staff) and dedicated volunteers from our member organizations. We had 66 participants in total, consisting of board members and volunteers from European OIFE members, two representatives from associate members in addition to industry representatives and three invited speakers who covered several topics. The conference was held at the Barcelo hotel, in Valencia, Spain chosen because of central location and wheelchair accessibility.

A man standing with a white shirt and jeans looking at the women standing at his left, she has blonde short hair, a white and red dress and she's holding a red iPad. On the background there is a projector with a presentationThe invited speakers included Jan Geissler and Ananda Plate from Germany, who are very experienced patient experts from the cancer field. Together they run the consultancy Patvocates, who provide advice on how the pharmaceutical industry and patient groups can work together in a more transparent and constructive way. Jan is also the formerdirector of the European Patient’s Academy on Therapeutic Innvovation (EUPATI). Together they covered topics like research and development, regulatory affairs interaction with pharma and fundraising.

Woman with a print green and white dress, she has grey curly hair and white shoes

The second invited speaker was Claudia Crocione, who is a volunteer and patient expert from another rare disease field. Claudia is the manager of the Italian organization for Hereditary Hemorraghic Telangiectasia (HHT) and she is also involved in the European HHT federation. Claudia gave two very engaging and informative workshops, about management of nonprofits – and explained topics like the importance of having mission statements, strategic plans and recruitment of volunteers. The organizations were asked to reflect on how they were working today vs. how they could do things more effectively in the future. Claudia received very good reviews and most of the participants expressed that they would like to have a follow-up session with Claudia.

Woman smiling with a head microphone, she has a white top with a black sweater, black jeans and hair in a pony tail. We also used the opportunity to disseminate findings from the IMPACT survey. Samantha Prince, who has been one of the central people behind the implementation of the IMPACT survey, gave an excellent talk on results from the survey and how the organizations can use the data in their advocacy work on an international and national level.

The conference also included a panel debate with young people on how the organizations can recruit and retain young people. Questions like how to include people from minority groups and refugee backgrounds were also discussed. An agreement was made, that these are topics we need to discuss more and come up with recommendations for the organizations on.

We also made sure to have time in between and after the sessions, so that our member organizations could get to know each other better. This included a social outing on Saturday night to a restaurant on the beach, where people got to taste the popular dish from Valencia – the paella. Unfortunately, the dinner was somehow disturbed by the fact that the restaurant was completely unprepared for more than 20 guests using wheelchairs, even if we had told them two times in advance. To avoid similar situations in the future, we have decided to create a check-list to make sure our events are accessible for everyone – this include both wheelchair access, but also proper equipment for the hearing impaired.

Group of 9 people. The first one is a woman in a wheelchair with red hair and a red dress, next to her a woman with long black hair, glasses and a red and white dress, on her left there's another woman with short red hair and a yellow suit holding a glass of wine, at her left there's a man with a green shirt, at his left a woman with short blonde hair and a blue top, at her left a woman with a pony tail and a white shirt, at her left a woman with long blonde hair and a pattern dress white and purple, at her left a man with gray shirt and at his left a man in a wheelchair with white shirt and a yellow cap

The conference also included a panel debate with young people on how the organizations can recruit and retain young people. Questions like how to include people from minority groups and refugee backgrounds were also discussed. An agreement was made, that these are topics we need to discuss more and come up with recommendations for the organizations on.

We received grants from industry to cover the costs. Thank you so much to our supporters Ultragenyx, UCB, Mereo BioPharma, Angitia Bio and EURORDIS. Without your support it would not have been possible to subsidize the costs for our member organizations and pull off such an impactful event.

The event as a whole, received a very positive evaluation from those who took part. More than 90% of the participants answered very good or excellent as their overall assessment. Ca 70% of the representatives from the organizations, said it was extremely or very relevant content. And almost 80% felt more informed and almost 90% felt more motivated.

Quote from one of our members:

“The topics picked for the conference where spot on for our organizational needs.

We feel supported!”

We believe this project strongly benefited our members, but also the stakeholders OIFE is working with – because the member organizations will be more educated and better equipped to fill their role as national patient advocacy groups.

When asked what was the most useful take aways from the conference, our members replied:

  • The strategic planning – how to optimize your organization
  • Using social media more effectively
  • Recruitment and training of volunteers
  • Knowledge about how to interact with pharmaceutical industry
  • The importance of mission statements and overarching goals and objectives
  • Meeting other organizations with similar challenges

Another thing we must mention – is a big thank you to Julia Piniella from the Spanish OI-organization, who helped us a lot in the planning and implementation of the event. Without Julia we would never have ended up in Valencia – which most agreed was one of the most beautiful and wheelchair accessible cities they had ever been to. Below there is a photo of the Spanish delegates and Ingunn.

The first person is a blonde woman holding a champagne glass, she has a pony tail and a pattern top black and white, at her left a woman holding a glass of champagne, she has long black hair, a blue dress and sunglasses. At her left is a man on a wheelchair holding a glass of champagne, he has a jean and a pattern shirt with colors. The last person is a woman holding a glass of champagne, she has blonde hair, a white jacket and a pattern dress pink and blue
Ingunn together with Spanish delegates Marina, Pablo and Julia.

Next year we will go to Norway for our annual conference from June 5-8. See you in Oslo 2025!