Vienna (OTS) –
- 96 percent of people with rare diseases would make their data available for research (EURORDIS Rare Barometer)
- Austrian data space would be necessary for the implementation of the EHDS (European Health Data Space).
- Use of health data is key topic for EU action plan for rare diseases
- EURORDIS petition on the recommendation of Health Commissioner Stella Kyriakides will be sent to Commission President Ursula von der Leyen on February 29th
Around 450,000 people in Austria live with a rare disease. This corresponds to more than the population of the whole of Vorarlberg. But disease-specific therapy is only available for 6 percent of those affected. “That is reason enough to once again make an appeal to those responsible in the domestic health sector on Rare Disease Day today,” says Dominique Rumpf, deputy. Chairwoman of Pro Rare Austria, the alliance for rare diseases. “In the run-up to the European elections in June and the National Council elections in the autumn, the course is now being set for health policy measures, and such a large population group with such urgent needs must not be forgotten.”
Call for an EU action plan for rare diseases
“Rare diseases are often associated with life-threatening conditions and/or disabilities of varying degrees, and this has a corresponding impact on those affected and their families,” says Stütz. “That is why patient organizations across Europe are calling for an EU action plan for rare diseases, similar to the EU Cancer Plan, and have started a petition.” This demand paper from EURORDIS (European Rare Disease Organisation) is presented by Stella Kyriakides, EU Commissioner for Health , co-sponsored and sent to EU Commission President Ursula von der Leyen on February 29th.
Key topic: data
An essential part of the EU action plan, which is intended to bring together existing health policy strategies and measures and close important gaps, is the targeted use of data. This goes back to recommendations from The Rare 2030 Foresight Study[i]. Great importance is attached to the use of patient data to research disease mechanisms and causes and to develop therapies. “Almost all, namely 96 percent, of people with a so-called rare disease would be, according to the EURORDIS Rare Barometer survey[ii] willing to make their data available for research and development. But the framework conditions are missing,” emphasizes patient representative Dominique Zeile. “The European Health Data Space Act (EHDS) regulates the exchange of data taking data protection into account. However, the European Data Space requires a data space at the national level – and this does not yet exist. This means that an Austrian data room is needed where data is linked and bundled at the university clinic or hospital level.”
Specifically, Pro Rare Austria is thinking about consistent disease-specific registries and an Austria-wide registry for rare diseases as a whole. “Such registers are already being created in Germany and Switzerland. Unfortunately, we are lagging behind. “We therefore appeal to everyone who wants to shape health policy in the coming years to take this into account,” said Stütz. Such registries are the basis for the research and development of innovative therapies and they lay the foundation for the care of those affected.
Equal access to diagnosis and therapy
Last but not least, the EU Action Plan for Rare Diseases advocates equal access to diagnosis and therapy, if necessary also in other EU countries within the framework of the European Reference Networks for Rare Diseases. These are part of the Cross Border Healthcare Directive from 2011 and form the framework for adequate integrated, including psychosocial, care for patients. “Those affected – around 450,000 people in Austria – have a right to this,” says Stütz. “Because rare is not rare.”
Event tip
What central importance these topics have for people with rare diseases in Austria is becoming clear today February 29, International Rare Disease Day, at 6 p.m as part of the AHF-NetUp „Rare Disease Policies – Next Steps!“ discussed with relevant experts in parliament. (live stream)
About Pro Rare Austria
Pro Rare Austria, Alliance for Rare Diseases, was founded at the end of 2011 as a non-profit association of those directly affected and parents of affected children. The nationwide umbrella organization for patient organizations and self-help groups has around 100 members across Austria. As Pro Rare Austria we stand for all people who live with a rare disease.
www.prorare-austria.org/
[i] Recommendations from The Rare 2030 Foresight Study
[ii]
Questions & Contact:
Pro Rare Austria, Alliance for Rare Diseases
Contact: Mag. Elisabeth Weigand, management
+43 664 103 94 89
office@prorare-austria.org
www.prorare-austria.org
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