Welcome To The Community Of NephcEurope!

On behalf of all patients, mothers and fathers of the European patient-organization & fundraising foundation NephcEurope, we wish you welcome on our website!

NephcEurope is a European wide working patient organization and foundation in the field of Nephrotic Syndrome.

An organization built by parents and patients in order to provide service and support to other patients or their parents.

Not on a national basis but on a European basis!

NephcEurope is open for patients coming from all over Europe to share their experiences and worries being confronted with this disease.

We are a fundraising foundation stimulating the research for the cause and cure of Nephrotic Syndrome.

 

NephcEurope supports this initiative to the full:

Action

Take part in webinar on new Rare Barometer Voices survey initiative

Following the success of the EurordisCare surveys, EURORDIS recently launched Rare Barometer Voices, a new survey initiative available in 23 languages. The initiative aims to strengthen the voice of rare disease patients by collecting information on the experiences of people living with or affected by a rare disease via regular online surveys.

Participate in a webinar on 22 April (11:00 – 12:00 GMT+1) led by Avril Daly, EURORDIS Vice-President, and Sandra Courbier, EURORDIS Rare Barometer Leader, to learn more about Rare Barometer Voices and how you can get involved! Sign up for the webinar here.

Nearly 800 people have already registered to take part in future surveys. More people are still needed to better represent the voice of the rare disease community. Register here!

Apply to become a European Patient Advocacy Group (ePAG) patient representative

EURORDIS is supporting members to ensure a democratic process of patient representation in the decision-making processes for European Reference Networks (ERNs) and is therefore developing a European Patient Advocacy Group (ePAG) for each ERN disease grouping. ePAGs will bring together elected patient representatives and affiliated organisations to ensure that the patient voice is heard throughout the development of ERNs.

Individuals from ePAG member organisations can run for election to become an ePAG patient representative. If you would like to apply (deadline 18 April) please email lenja.wiehe@eurordis.org. Elections will take place 19 April – 3 May. More info.

Rare disease patient organisations across the EU that wish to register their interest to become an ePAG member organisation can also email lenja.wiehe@eurordis.org.

6 weeks to the 2016 European Conference on Rare Diseases & Orphan Products

There are only 6 weeks until the European Conference on Rare Diseases & Orphan Products 2016 Edinburgh (ECRD 2016), taking place 26 – 28 May. Register here to attend and take part in this year’s new sessions: a ‘soap box’ lunch session, research speed networking session and sessions on this year’s extra theme ‘In Partnership with Patients’.

EURORDIS Membership Meeting 2016 Edinburgh

Register to attend the EURORDIS Membership Meeting (EMM) 2016 Edinburgh, taking place on 26 May in conjunction with ECRD 2016. This year’s EMM will include the EURORDIS General Assembly and workshops on ERNs and ePAGs, RareConnect, social innovation, and good clinical practice.

 

Information

New recommendations to integrate rare diseases into social services & policies

The European Commission Expert Group on Rare Diseases has adopted new recommendations on how to support the incorporation of rare diseases into social services and policies. EURORDIS volunteers, members and staff have worked on the development of these recommendations, which advise Member States and the European Commission on issues that should be considered for health services to be able to support incorporation of rare diseases into mainstream social and support services. Please email raquel.castro@eurordis.org with any questions.

EURORDIS Therapeutic Report – February & March editions available

Read the February and March editions of the new-design EURORDIS Therapeutic Report to get the latest news about important activities at the European Medicines Agency (EMA) on orphan medicines, medicines safety and the various committees at the EMA.

 

Please contact me if you have any enquiries or need additional information.

Kind regards, Anja Helm

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