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December 2009, issue 49
EURORDIS advocating to improve patient access to orphan drugs in Europe: the creation of a Working Party for European collaboration on the scientific assessment of the Clinical Added Value of Orphan Drugs Rare Disease Day 2010: Coming up! Bridging Patients and Researchers: The case of DEBRA International Noonan Syndrome Angels: An Italian patient organisation is fighting for them Events 2009 Events 2010
November 2009, issue 48
EURORDIS paper assesses the real impact of orphan drugs in Europe: Dispelling the Myths about the Burden of Orphan Drugs to Society Improving communication of the benefit and risks of medicines: An EMEA survey seeks to render information on medicines more useful for patients A National Plan for rare diseases in Portugal: Two years after the Fourth European Conference on Rare Diseases in Lisbon, the Portuguese are ready to implement their own National Plan Events 2009 Events 2010
October 2009, issue 47
EURORDIS-NORD Strategic Partnership agreement signed Second EURORDIS Summer School for Patient Advocates Patient representation at the EMEA Committee for Orphan Medicinal Products: Why it is important to you From Belgium to Sweden: two examples of fighting Ehlers-Danlos syndrome Events 2009 Events 2010
July 2009, issue 46
No Policy without Patients! The EURORDIS Membership Meeting 2009 Athens on 8-9 May Online Patient Communities: learning from the Duchenne Community Marfan syndrome: the silent disease Events 2009
June 2009, issue 45
The Undiagnosed Disease Program Celebrates its First Year: innovative clinical research program aims at providing answers for patients with rare conditions that have long eluded diagnosis Bulgaria at the forefront of rare disease policy: the adoption of a National Plan for Rare Diseases Towards an international standard of coding and classification of Rare Diseases: Rare Diseases to be included in the revised version of the International Classification of Diseases CHARGE Syndrome: the daily battles of Jonas Events 2009
May 2009, issue 44
EURORDIS Voices Concerns about the Safety and future Availability of Plasma-Derived Medicinal Products in the European Union Focus on National Plans for Rare Diseases: Ireland moving forward Marshall-Smith Syndrome: Reaching for the STARS Events 2009
April 2009, issue 43
Rare Disease Day 2009: Patient Care, a Public Affair! Rare Disease Day 2009: Listen to the Voice of 12,000 Patients Two EURORDIS’ representatives appointed to the Committee for Advanced Therapies at the European Medicines Agency The European Network of Rare Disease Help Lines: New steps and challenges Events 2009
March 2009, issue 42
EURORDIS’ Annual Membership Meeting 2009 Rare Disease Patients represented at the EMEA Paediatric Committee A new Network for European Rare Disease Federations Rare Diseases in Australia: a piecemeal approach Events 2009
February 2009, issue 41
The Voice of 12,000 Patients: A new book published by EURORDIS GENESKIN, a European Reference Network for people affected by rare genetic skin diseases A Special Day for Rare Diseases The UK Fragile X Society: Information and support for families and professionals Events 2009
January 2009, issue 40
European action in the field of rare diseases EUROPLAN: a joint action for National Strategies and Plans for Rare Diseases in all EU Member states At the crossroads of two worlds: Rare Cancers Speaking with the eyes: Locked-in syndrome Events 2009
December 2008, issue 39
Unity and empowerment for rare disease patients CAPOIRA - the way forward: capacity building for patient associations in research activities Laura Galluppi: Special Olympics champion and rare disease patient Events 2009
November 2008, issue 38
Innovative patient consultation process on RD policies launched by EURORDIS Is there a need for medical devices to be further regulated? What’s in it for rare disease patients? Important steps towards new EU action for improving access to orphan medicines for all patients in the EU Living up to your dreams: Daniel’s life with Aniridia
Events 2009
October 2008, issue 37
Rare diseases on the agenda during the French presidency of the EU Improved understanding of the regulatory process of drug development and clinical trials in Europe: EURORDIS’ First Summer School for Patient Advocates The US passes ground-breaking legislation to fight against genetic discrimination Reaching out beyond the frontiers: the example of the Dutch Cutis Marmorata Telangiectatica Congenita (CMTC) Association
July 2008, issue 36
A pioneering residence and activity centre for young adults living with a rare disease: learning from Denmark Portrait of a European militant: Björn Håkansson, Swedish thalidomide victim
June 2008, issue 35
Rare! Together: A new project to promote European disease-specific federations The US Orphan Drug Act celebrates its 25th Anniversary "Smiles for Moldova": Raising funds for maxillofacial prosthetics Michael Griffith: a vision ahead
May 2008, issue 34
Proposal for an EU Directive on Organ Donation and Transplantation: Renewed hope for rare disease patients How much is a life worth? How Swedish patients fought to have access to a very expensive orphan drug
April 2008, issue 33
Beyond RAPSODY, EURORDIS’ battle to ensure access to specialised services for rare disease patients Eurordis’ On Line Patient Communities come of age Two associations, one single battle against rare chromosome disorders
March 2008, issue 32
Structured Multidisciplinary Clinics for Alström Syndrome: a patient-led approach
February 2008, issue 31
European Conference on Rare Diseases Lisbon 2007 European Network for Rare Paediatric Neurological Diseases (nEUroped) Greece on the way to its own National Plan for Rare Diseases The Geiser Foundation: Uniting rare disease patient groups in Latin America
January 2008, issue 30
4th Eurordis Survey shows Unequal Access to Orphan Drugs in Europe Preimplantation Genetic Diagnosis and patient mobility Walk around the World for Brain Tumour Patients DEBRA Europe: A pan-European network for Epidermolysis Bullosa
December 2007, issue 29
EurordisCare3 Survey: First Results Denmark: a focus on social services for rare disease patients
November 2007, issue 28
Commission Communication on Rare Diseases Commission Conference on Rare Disease Research United Nations Treaty for people living with disabilities Swiss French- and Italian-speaking Muscular Dystrophy patient organisation (ASRIM)
October 2007, issue 27
European Conference on Rare Diseases 2007 Lisbon Prague Workshop on Centres of Expertise and European Reference Networks First Rare Disease Conference in Romania
July 2007, issue 26
Needs of patient groups for accessing RD research resources Web of the Month: NIH>
June 2007, issue 25
Eurordis’ training programme for patient groups RehabCare: Irish Centre of respite care services Web of the Month: EudraPharm>
May 2007, Issue 24
Rare diseases in the 7th Research Framework Programme European network of respite care services for rare diseases Web of the Month: PubMed >
The Eurordis E-Newsletter is made possible thanks to the generous funding of The Medtronic Foundation.
08/2009
The Eurordis Newsletter is published each month in electronic format only. 
