III INTERNATIONAL EPIRARE WORKSHOP - Rare disease and orphan drug registries

November 24-25, 2014

Call for abstracts is open

• Deadline for abstract submission: October 12, 2014. No abstracts will be accepted after this date.
• Deadline for registration: October 15, 2014. Due to organizational constraints and limited available places, registration after this date cannot not be guaranteed. Registration is carried out by filling the on-line form which can be found at this link
• Notification of abstract acceptance: October 27, 2014.

[website]

REPORT FROM THE COMMISSION TO THE EUROPEAN PARLIAMENT, THE COUNCIL, THE EUROPEAN ECONOMIC AND SOCIAL COMMITTEE AND THE COMMITTEE OF THE REGIONS

5 September 2014

Implementation report on the Commission Communication on Rare Diseases: Europe's challenges [COM(2008) 679 final] and Council Recommendation of 8 June 2009 on an action in the field of rare diseases (2009/C 151/02)
[document]

International Myotonic Dystrophy Consortium Meeting (IDMC) will return to Paris

From the 8th to the 12th of June 2015 in Paris will be held the 10th edition of the IDMC meeting.
The International DM Consortium Meeting was created in 1997 in order to accelerate clinical and fundamental research, towards the development of new therapeutic strategies. For its 10th edition, the IDMC meeting will return to Paris where it started. While about 80.
[website]

"II International Summer School - Rare disease and orphan drug registries" in on-line streaming

We encourage you to register early for online streaming in order to gain access to session materials and participate in online dialogue in advance of your streamed session(s).
Registering for online sessions will not allow you to physically attend the training conference in Rome.
If you wish to physically attend the conference, you should register here

INCORPORATING THE PATIENTS PERSPECTIVE - Director of NORD Gives Recommendations at Capitol Hill Hearing

15 July 2014

[article]

NORD’s Rare Diseases and Orphan Products Breakthrough Summit

21-22 October, Alexandria, Virginia

[website]

European Research Conference on Paediatric Neurology 2014

12-13 September 2014 - Bucharest, Romania

[website]

EUROPLAN Conference "Centres of Expertise in Romania" by ANBRaRo & NCRD

18-19 July, Bucarest

[program] [website]

EUCERD Reports 2014

The reports on the State of the Art of Rare Disease Activities in Europe
[website]

It's Not Rare to Have a Rare Disease

June 2014

Scotland has published the Implementation Plan for Rare Diseases
[download the document]

The World Orphan Drug Congress Europe 2014

12 - 14 November, Belgium

The aim of the conference is to discuss the state of play on the organisation of highly specialised networks and their members across the EU and to look into the next steps of the deployment process, in preparation for the forthcoming call for European Reference Networks in 2015.
[website]

European Reference Network Conference

23 June 2014, Brussels

The aim of the conference is to discuss the state of play on the organisation of highly specialised networks and their members across the EU and to look into the next steps of the deployment process, in preparation for the forthcoming call for European Reference Networks in 2015.
[Agenda] [Registration and contact]

Expert Group on Rare Diseases: second meeting

3-4 July 2014, Luxembourg

The second meeting of the Commission Expert Group on rare diseases will be held in Luxembourg on 3-4 July 2014. Several topics will be tackled, including the codification of rare diseases, European Reference Networks for rare diseases.

II INTERNATIONAL SUMMER SCHOOL - Rare diseases and orphan drug registries

National Institute of Health, Rome (Italy), September 15-19, 2014

Registration is carried out by filling the on-line form which can be found at this link
Deadline for registration: July 10, 2014
Notification of acceptance: July 15, 2014
For additional information, clarifications, or questions, please contact the School secretariat at rareregistries-school@iss.it.
Please check periodically on the any updates on the School on CNMR website

IRDiRC second conference

7–9 November 2014, Shenzhen (China)

China will host the second conference of International Rare Diseases Research Consortium (IRDiRC). The meeting will gather top scientists from Europe, North America and Asia for dynamic exchanges on knowledge and expertise and will be held on 7-9 November 2014 in Shenzhen, in collaboration with the Beijing Genomics Institute (BGI). Registration for this event will open shortly
Visit the website

Second International Congress ‘NARRATIVE MEDICINE AND RARE DISEASES’

13th June 2014, National Institute of Health, Rome

For additional information, clarifications, or questions, please contact the School secretariat at medicina.narrativa@iss.it
Visit the website

Adopted the first Ukrainian law for Orphan Diseases

15 April 2014

The Verhovna Rada has adopted the first Ukrainian law (No. 2461) for Orphan Diseases by 260 votes.
The law defines the notion of a “rare (orphan) disease” and includes a number of legal provisions that aim at prevention of these diseases and securing a full-fledged realization of rights of persons suffering from these diseases to medical aid
Visit the website

European Recommendations for Primary Prevention of Congenital Anomalies

April 2014

Published the paper "European Recommendations for Primary Prevention of Congenital Anomalies: A Joined Effort of EUROCAT and EUROPLAN Projects to Facilitate Inclusion of This Topic in the National Rare Disease Plans" in the Journal Public Health Genomics. The paper is the result of an excellent and fruitful collaboration between EUROCAT Joint Action and EUROPLAN (WP4-EUCERD JA)
Visit the website

European Reference Networks (ERNs)

March 2014

In keeping with Directive 2011/24/EU of the European Parliament and of the Council, the European Commission (on 10 March, 2014) adopted two Decisions on the establishment of European Reference Networks (ERNs). The criteria that European Reference Networks must fulfil and criteria that healthcare providers wishing to join such networks must fulfil, are available online. Both Decisions are expected to enter into force by the end of May 2014
Download the document
Visit the website

Belgium has approved the National Plan for Rare Diseases

February 2014

Download the document

Rare Diseases. How Europe is meeting the challenges

November 22, 2013

RARE-Bestpractices is in a report of the European Commission of selected rare disease EU funded research projects
Download the document

Appointed the new EU committee of experts on rare diseases

The European Commission (EC) has nominated the Commission Expert Group on Rare Diseases, which replaces the European Committee of Experts on Rare Diseases (EUCERD). The expert group will carry out certain tasks in the field of rare diseases that include assisting in drawing up guidelines and recommendations, providing advice on implementing EU actions, monitoring, evaluating and disseminating results of EU and national measures, and international cooperation. This group on rare diseases, chaired by the EC, will meet for the first time on 11-12 February 2014 in Luxembourg.
For more information visit the website

ECRD 2014: The European Conference on Rare Diseases & Orphan Products

8 to 10 May 2014 - Andel's Hotel, Berlin – Germany

Deadline for Poster Abstract Submission: 15 December 2013
For more information visit the website

Participate in Rare Disease Day 2014

25 February 2014

For more information visit
the EURORDIS website
the RDD 2014 Theme & Slogan

Chinese Rare Disease Research Consortium accepted as a member of IRDiRC

For more information visit the IRDiRC website

The first UK Rare Diseases Strategy was launched by Health Minister Lord Howe

22 November 2013

See the Press release
D ownload the UK RD Strategy]

2nd Edition of the International Workshop "Rare Disease and Orphan Drug Registries"

21-22 October 2013 - ISS, Rome, Italy

Deadline for registration: 30 September 2013
For more information visit the RDD 2014 Theme & Slogan

8th ICORD Conference

1-2 November 2013 - St.Petersburg, Russia

Deadline for application submission: 10 October 2013
For more information visit the RDD 2014 Theme & Slogan

Ireland: National Rare Disease Plan 2014-2018 launched

03 July 2014, Dublin, Ireland

[download the Plan]
[download the Report of the Consultation]
[read the press release]

GERMANY: National Plan for Rare Diseases 2013

For more information visit
the NAMSE website
the Federal Ministry of Health website
the BMBF website
Download the document in Deutsch

RARE DISEASES AND ORPHAN DRUGS

An International Journal of Public Health - Call for paper

Download the document in Deutsch
For more information visit the website

International Summer School "Clinical practice guidelines on rare diseases"

8-12 July 2013

Istituto Superiore di Sanità, Rome - Italy
The course will development process of clinical practice guidelines, providing the basics of clinical practice guideline and evidence synthesis approaches.
Deadline for application submission: 21 April 2013
For more information visit the website

Recommendations on Core Indicators for National Plans/Strategies for Rare Diseases

5-6 June 2013

The European Union Committee of Experts on Rare Diseases (EUCERD) adopted the Recommendations on Core Indicators for National Plans/Strategies for Rare Diseases in its 8th meeting held on 5-6 June 2013. This document provides a list of 21 indicators which are intended to capture relevant data and information on the process of planning and implementing of these plans and strategies on a regular basis Download the document

FindZebra: a specialised search engine for Rare Diseases

This search engine support medical professionals in diagnosing difficult patient cases.
With a simple and consistent interface across all devices, it's can find over 31,000 medical articles focused on rare and genetic diseases from reputable sources on the internet.
For more information visit the website

Primary prevention of congenital anomalies

Recommendations on policies to be considered for the primary prevention of congenital anomalies in National Plans and Strategies on Rare Diseases
For more information visit the website

Italian National Plan for Rare Diseases consultation.

For more information visit the website

Slovak National Strategy for the Development of Health Care for Patients with Rare Diseases 2012-2013

Download the document in slovak
Download the document in english