EUROPLAN: a joint action for National Strategies and Plans for Rare Diseases in all EU Member states

EUROPLAN is a three year project which began in April 2008. Its main goal is to develop recommendations on how to define a strategic plan for rare diseases.

That is, Rare Diseases National Plans | plans nationaux de lutte contre les maladies rares | Planes Nacionales de Enfermedades Raras | Piani Nazionali per le Malattie Rare | nationaler Pläne für seltene Krankheiteninformation on the different steps and priority areas of interventions in the field of rare diseases. The project is funded by the European Commission (DG SANCO). Basically, it aims at providing a tool box of methodology, best practices, case studies and indicators to help each EU Member State define their national plan for rare diseases. EUROPLAN includes 25 countries and EURORDIS as a main partner representing patients.

How will it work? The process starts from a description of the 'state of play' on rare diseases in each country. Then, specifics are looked at. For example, Member States will identify priority areas and actions to include in national plans. They will also analyse case studies to identify already successful experiences. The recommendations in the Commission Communication should be presented to local stakeholders in each Member State. EUROPLAN is made up of eight 'work packages', coordinated by Dr.Domenica Taruscio, Director of the National Centre for Rare Diseases, Italy. Taruscio described the project as 'not rich and high risk'. Nevertheless, she said, “EUROPLAN needs to be entirely inclusive and collaborative for it to be successful so anyone who wants to be involved should contact me. Feedback will make or break this project”.

Stakeholders include national authorities and health care planners, health care professionals, researchers and patients. Taruscio described EUROPLAN as 'not so much a project but a process'. EUROPLAN should stimulate discussion and hopefully reach consensus as well as to generally promote the development of national plans in all European countries. “Ultimately, we hope that EUROPLAN will be a practical instrument to support countries in designing their national plans for rare diseases,” declared Taruscio.

Rare Diseases National Plans | plans nationaux de lutte contre les maladies rares | Planes Nacionales de Enfermedades Raras | Piani Nazionali per le Malattie Rare | Planos Nacionais para as Doenças Raras | nationaler Pläne für seltene KrankheitenThe EUROPLAN project is divided into eight 'work packages'. Overview of each work package:

  • Work package 1-3: management of the EUROPLAN project, and dissemination of results and evaluation;
  • Work package 4: collection of information on initiatives already taken by Member States;
  • Work Package 5: development of indicators for monitoring, implementation and evaluation of national plans;
  • Work package 6: analysis of case studies to identify successful experiences;
  • Work package 7: development of content of EUROPLAN recommendations;
  • Work package 8: organisation of 15 national conferences by EURORDIS and national alliances on the transposition of the European policy framework and common recommendations into national strategies and plans.

patient organisations interact and network | les associations de malades nouent des relations avec d'autres participants | los representantes de organizaciones de pacientes | i rappresentanti dei pazienti | os representantes de organizações de doentes | die Repräsentanten von Patienten-OrganisationenThe eighth package, the organisation of national conferences to present EUROPLAN recommendations, is vital and will be taken charge of by EURORDIS. It is important because it will discover if a potential strategy or plan is actually useful in the real world and if it can be used. The eighth work package will discuss the transferability of the recommendations with local stakeholders in the different countries. National conferences will begin in 2010 and will have a political dimension.

For more information:
Valentina Bottarelli
European Public Affairs Advisor, EURORDIS,
valentina.bottarelli@eurordis.org

It should be pointed out that in actuality, it will take years before all stakeholders will truly know and understand what is in the European Commission Communication on Rare Diseases. The important thing is to see how action plans could be implemented in each and every Member State. EURORDIS hopes that plans established through EUROPLAN will not be too complex and, above all, be realistic. “As a patient driven organisation, EURORDIS strives to be pragmatic and down to earth - we always want more and EUROPLAN is a real chance to work together to get results,” said Yann Le Cam, CEO of EURORDIS.

Le Cam was adamant in saying that “I hope that even beyond 2011, after plans have been established, we will all continue on a strong and solid base. The actions we will undertake together at European level and through the first years of national plans are the building block for the future of rare disease in Europe.”

For more information:
Domenica Taruscio
National Centre Rare Diseases
Istituto Superiore di Sanità
Viale Regina Elena, 299
00161 Roma - Italy
Tel. +39 06 499 04016
http://www.iss.it/cnmr
 

Download the EUROPLAN brochure
Key Documents relating to the EUROPLAN Project
Details of the National Conferences
EUROPLAN Website

Author: Gemma Lougheed
Photo credits: © Eurordis except French National Plan for Rare Diseases © www.sante.gouv.fr/