ADVOCACY

Rare2030 & OIFE at EURORDIS events 2019

Holistic and Integrated Care by 2030: EURORDIS Membership Meeting 2019 in Bucharest

By Dana Andrei, OIFE Delegate Romania & Rebecca Tvedt Skarberg, OIFE delegate Norway and ERN BOND ePAG

Black Pearl Events

The Black Pearl Events took place on the 12th of February and Rebecca Tvedt Skarberg and her husband Knut Erik were invited to attend. They had the pleasure of meeting the Princess of Romania and other royal guardians of the awards. The awards gather and pay tribute to people, organizations and companies who make outstanding efforts for people with rare diseases. After welcome drinks in the foyer of the Le Plaza Hotel in Brussels they enjoyed a three course meal while the awards were being presented.

The rare disease field consists by people who think outside the box, who are willing to work hard and go the extra mile for raising awareness about their disease. The many testimonies from the prize winners underlined this fact. You can read more about the event here.

EURORDIS AGM 2019

Over 200 representatives of people living with a rare disease were present at the EURORDIS Membership Meeting in Bucharest from May 17th – 18th 2019. The meeting included the Annual General Meeting of EURORDIS followed by workshops where various topics were discussed. Romanian delegates Dana Andrei and Florenta Plugariu represented OIFE with the support of Rebecca Tvedt Skarberg.

The goal was to discuss next steps for implementation of the new position across Europe for the provision of holistic care for the 30 million Europeans living with a rare disease and their families by 2030 structured around three pillars that were explored in detail:

• Quality and adequate social services and policies
• Integrated care: bridging health and social care
• Equity of rights and opportunities

OIFE delegates Dana and Florenta with EURORDIS Board member Dorica Dan.

EURORDIS and its members are calling upon the EU, all European countries and all stakeholders within the health and social sector, to disseminate the new position about holistic care and to take action based on its recommendations.

The Panel Discussion covered:

• Five targets that will allow to achieve holistic care for by people living with a rare disease in Europe and their carers 2030 Europe and their carers 2030
• How to start and promote integrated/holistic care at national level
• What achievements/services do we already have that can be used for integrated holistic care for rare disease patients and the wider community

You can find all the presentations from the workshops here.

For me as both representative not only of OIFE but also of the Romanian OI-association it was a very useful meeting to get new knowledge. I could collect a lot of helpful information to improve the collaboration between the Romanian OI-association OIROM and the Romanian National Alliance for Rare Diseases.
Many thanks to OIFE for allowing me to represent them in this meeting!

Rare 2030

Rare2030 is a first-of-its-kind project created to carry out a foresight study on the future of rare disease policy. Led by EURORDIS in cooperation with seven other partners, Rare2030’s end goal is to propose policy recommendations that will lead to a better future for people living with a rare disease in Europe.

The partners have already brought together nearly 180 key opinion leaders in a new Panel of Experts and started building a knowledge base of new trends that will drive future rare disease policy. This panel has met online through several webinars and will convene on 7 November in Brussels to validate these identified trends and consider future policy scenarios that could form the Rare2030 concluding recommendations.

OIFE will contribute to the process through our ERN BOND ePAG Rebecca Tvedt Skarberg. Rebecca and Dana already participated by attending the Rare2030 workshop held during the EURORDIS Membership Meeting 2019 where participants brainstormed future trends and drivers of change in rare disease policy. The information from that meeting is being brought together in a series of steps of consultation that will inform the final recommendations, to be presented at the European Parliament in late 2020.

Rebecca Tvedt Skarberg is OIFE’s voice in Rare2030