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Who We Are
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What We Do
Get Involved
Advocacy & EU Policy-Making
Our Services for Patients
About Rare Diseases
About Orphan Drugs
About Patient Groups
Rare Disease Sites
News, Events & Newsletter
Publications
© Eurordis All rights reserved.
About this website
Disclaimer
Privacy Statement
Site Map
Who We Are
001. Our mission
002. In brief
003. Achievements
010. Board of Directors
011. Staff
012. Volunteer translators
013. Employment opportunities at Eurordis
030. Activity reports & by-laws
031. Financial Information and Funding
040. Contact us
Our Members
001. Join the European Rare Disease Network
002. Members’ News and Announcements
007. Annual Membership Meeting: Athens 2009 - Photos
007. Annual Membership Meeting: Athens 2009 - Presentations
012. Online payments
014. National Rare Disease Alliances
15. European or International Networks - Member Organisations
16. Argentina (associate member)
17. Armenia (associate member)
18. Austria
20. Belgium
24. Bulgaria
26. Burkina Faso (associate member)
27. Canada (associate member)
28. Croatia
28. Cyprus
29. Czech Republic
30. Denmark
31. Finland
40. France
50. Germany
55. Greece
58. Hungary
59. Iceland
60. Iran
60. Ireland
70. Italy
71. Latvia
73. Luxembourg
74. Malaysia
75. Malta
80. Netherlands
81. New Zealand (associate member)
82. Norway
83. Poland
85. Portugal
87. Romania
87. Russian Federation
88. Serbia
89. Slovakia
90. Slovenia
91. Spain
92. Sweden
93. Switzerland
94. Taiwan (associate member)
94. Turkey
95. Ukraine
96. United Kingdom
97. USA (associate member)
What We Do
001. Our activities
009. POLKA: Patients’ Consensus on Preferred Policy Scenarii for Rare Disease
010. Support for research: EuroBioBank
018. Rare! Together: A new project to promote European disease-specific federations
019. A new Network for European Rare Disease Federations
020. RAPSODY: The Rare Disease Patient Solidarity project
021. CAPOIRA: Increasing patient involvement in research activities
030. Eurordis Charter for Clinical Trials in Rare Diseases
049. Eurordis 2010 Photo and Video Contest
050. Video contest winner - Rare Disease Day 2009
051. Winners of 2008 Photo Contest
058. European Network for Rare Paediatric Neurological Diseases (nEUroped)
059. EUROPLAN: a joint action for National Strategies and Plans for Rare Diseases in all EU Member states
060. TREAT-NMD: Accelerating treatments for neuromuscular diseases
Eurordis’ conferences & events
01. Our conferences & events
06. Rare Disease Day
08. European Conference on Rare Diseases (ECRD) 2007
Eurordis Survey Programme
018. The Voice of 12000 patients: EurordisCare2 & 3 Results Published
019. EurordisCare3: Helping shape the future of European Centres of Reference (2007)
021. EurordisCare2: Survey of diagnostic delays, 8 diseases, Europe (2004)
022. EurordisCare1: survey comparing health care, 6 diseases, 17 countries (2003)
040. Survey: 4th Eurordis Survey on Orphan Drugs Availability in Europe (2007)
050. Information Services for Rare Diseases: A European Survey (2004)
Eurordis Round Table of Companies
01. The Round Table: Purpose & Aims
02. Members of the Round Table of Companies
11. Eurordis Policy on Financial Support by Commercial Companies
12. Consider Joining the Round Table: Why & How
13. ERTC Workshops
20. Read more: Eurordis Newsletter article on ERTC (July 06)
Get Involved
03. Opportunities to get involved
Advocacy & EU Policy-Making
001. Our advocacy activities
002. The Eurordis European Public Affairs Committee (EPAC)
011. The process for writing Eurordis’ position papers
020. European Commission Communication and Council Recommendation on Rare Diseases
060. European Centres of Reference
How the European Union works
06. Short guide to EU policy-making
08. What the EU can do
10. The legislative acts: Regulations, Directives & other legislation
12. The decision-making procedures
14. How to influence the process
16. The European Commission
18. The Council of the European Union: Organisation
20. The Council of the European Union: Powers and decisions
22. The European Parliament: Elections & Composition
24. The European Parliament: Powers
26. The European Council
28. The Court of Justice and other EU institutions and bodies
Related Newsletter articles
091. Mobility of RD patients across health services in EU (April 07)
093. Embryonic stem cell research and therapy (Nov 06)
094. European Regulation for Paediatric Drugs: Fantastic news for our children (Oct 06)
095. The future EU regulation on advanced therapies (Mar 06)
096. The EU budget 2006 and financial perspectives 2007-2013 (Feb 06)
100. Transparency and non-governmental organisations (Dec 05)
101. A better European health policy (2007-2013) for rare diseases? (July 05)
102. Rare disease research given a boost under the 7th European Research Framework Programme 2007-2013 (July 05)
103. Eurordis criticizes gaps in WHO Priority Medicines report (April 05)
104. Rare Diseases must figure in European Research Programme (March 05)
Our Services for Patients
020. Our rare disease online communities - mailing lists
031. Eurordis Summer School for Patient Advocates: Training in clinical trials & drug development
041. The DIA 2010 EuroMeeting Fellowship Programme
About Rare Diseases
001. What is a rare disease?
005. Find information or help for a rare disease
007. Rare diseases: a public health priority
008. The consequences of diagnostic delay
015. The Rare Diseases Task Force
020. National Plans for Rare Diseases: France
Living with a rare disease
087. Pulmonary Hypertension: The courage to start a new life at 50 with a rare disease
088. Spinal Muscular Atrophy
089. Achondroplasia
090. Friedreich’s Ataxia
091. Fibrodysplasia Ossificans Progressiva (FOP)
092. Kabuki syndrome - very rare disease patients
093. NBIA - The isolation of very rare disease patients
094. Strümpell-Lorrain disease - Philippe Grammont
095. Chronic pain and rare diseases - Amanda Leighton-Bellichach
097. Ichthyosis - Flavio Minelli
098. Xeroderma Pigmentosum - Seris Family
099. Günther’s disease - Fide Mirón
100. Tuberous Sclerosis - Marianna and Katerina Lambrou
Related newsletter articles
100. The French National Plan for Rare Diseases
101. Prevention and rare diseases: Folic acid
About Orphan Drugs
01. What is an "orphan drug"?
02. Encouraging new drug development: laws, incentives and advocacy
03. Granting the label "orphan"
10. Orphan drug lists in Europe and the USA
20. The Committee for Orphan Medicinal Products (COMP)
25. Orphan drugs: The role played by Eurordis
30. Paediatric drugs and rare diseases
39. Working together on both sides of the Atlantic
40. Improving patient access to orphan drugs in Europe
41. Patient involvement in Protocol Assistance
45. Compassionate access to orphan drugs in the USA
About Patient Groups
01. Rare disease patient groups in the European Union
01. What is a patient group?
02. The role of patient groups
03. Small patient groups
04. Large patient groups
06. European rare disease organisations - alike and yet so different
10. National alliances of rare disease patient groups
11. A new Network for European Rare Disease Federations
20. So very rare: when no patient group exists
21. Patient organisation or not?
22. Guidelines for involving patients’ organisations in decision-making processes
Some Profiles of Patient Groups
074. The Federation of European Williams Syndrome Associations (FEWS)
075. Norway: Information and services for rare disease patients
076. A National Alliance for Rare Diseases in Hungary
077. Thalassaemia International Federation
078. The rare disease and orphan drug situation in the Netherlands
079. Osteogenesis imperfecta patients in Romania: Fighting for free drug access
080. Vaincre les Maladies Lysosomales (VML): Helping patients and supporting research
082. New Zealand Organisation for Rare Disorders: Far away but with similar issues
082. The first Rare Disease Awareness Week in Spain
083. Alliance Sanfilippo: A catalyst in research on rare diseases
084. Jeans for Genes: A charity dressed in denim
085. Thalidomide: Eurordis embraces the role of mediator
086. Living with Behçet: Information is power
087. Barretstown: Serious fun for seriously ill children
088. Rare Diseases in Eastern Europe
089. Cystic Fibrosis Europe: Empowering Patient Organisations in Central & Eastern Europe
090. European Myeloma Platform: A truly patient-driven European organisation
091. Arrhythmia Alliance: Achieving successful policy change
092. Histiocytosis X: The setting up of a patient observatory
093. Spanish Parkinson Federation: Self expression through the arts
094. FEDER: Spain on the move
095. TFRD: Looking beyond the borders of Europe
096. ACHSE: The German Alliance for Chronic Rare Diseases
099. European Chromosome 11q Network: Interview with Annet van Betuw, President
Rare Disease Sites
01. Find information or help for a rare disease
05. How to find quality health information on the internet
20. Patient advocacy & public health
30. Rare diseases: Information, research, registries & surveillance
40. Health, medicine & genetics information sites
50. Orphan drugs & clinical trials
News, Events & Newsletter
001. Subscribe to the Eurordis Newsletter
002. Newsletters: Current & Past Issues
007. Events 2010
008. Events 2009
120. EURORDIS advocating to improve patient access to orphan drugs in Europe (Dec 09)
121. Rare Disease Day 2010: Coming up! (Dec 09)
122. Bridging Patients and Researchers: The case of DEBRA International (Dec 09)
123. Noonan Syndrome Angels: An Italian patient organisation is fighting for them (Dec 09)
124. EURORDIS paper assesses the real impact of orphan drugs in Europe (Nov 09)
125. Improving communication of the benefit and risks of medicines (Nov 09)
126. A National Plan for rare diseases in Portugal (Nov 09)
127. EURORDIS-NORD Strategic Partnership agreement signed (Oct 09)
128. Second EURORDIS Summer School for Patient Advocates (Oct 09)
129. Patient representation at the EMEA Committee for Orphan Medicinal Products: Why it is important to you (Oct 09)
130. From Belgium to Sweden: two examples of fighting Ehlers-Danlos syndrome (Oct 09)
131. No Policy without Patients! (July 09)
132. Online Patient Communities: Learning from the Duchenne Community (July 09)
133. Marfan syndrome: the silent disease (July 09)
134. The Undiagnosed Disease Program Celebrates its First Year (June 09)
135. Bulgaria at the forefront of rare disease policy (June 09)
136. Towards an international standard of coding and classification of Rare Diseases (June 09)
137. CHARGE Syndrome: the daily battles of Jonas (June 09)
138. EURORDIS Voices Concerns about the Future Availability of Plasma-Derived Medicinal Products in the European Union (May 09)
139. Focus on National Plans for Rare Diseases (May 09)
140. Marshall-Smith Syndrome: Reaching for the STARS
141. Rare Disease Day 2009: Patient Care, a Public Affair! (Apr 09)
142. Rare Disease Day 2009: Listen to the Voice of 12,000 Patients (Apr 09)
143. Two EURORDIS’ representatives appointed to the Committee for Advanced Therapies at the European Medicines Agency (Apr 09)
144. The European Network of Rare Disease Help Lines (Apr 09)
145. EURORDIS’ Annual Membership Meeting 2009 (March 2009)
146. Rare Disease Patients represented at the EMEA Paediatric Committee (March 2009)
147. A new Network for European Rare Disease Federations (March 2009)
148. Rare Diseases in Australia: a piecemeal approach (March 2009)
149. The Voice of 12,000 Patients (Feb 09)
150. GENESKIN, a European Reference Network for people affected by rare genetic skin diseases (Feb 09)
151. A Special Day for Rare Diseases (Feb 09)
152. The UK Fragile X Society (Feb 09)
153. European action in the field of rare diseases (Jan 09)
154. EUROPLAN: a joint action for National Strategies and Plans for Rare Diseases in all EU Member states (Jan 09)
155. At the crossroads of two worlds: Rare Cancers (Jan 09)
156. Speaking with the eyes: Locked-in syndrome (Jan 09)
Swine flu and rare diseases
1. Swine flu - influenza H1N1
2. Swine flu care: the general situation
3. Swine flu care for persons at risk
Newsletter articles 2008
158. Unity and empowerment for rare disease patients (Dec 08)
159. CAPOIRA: the way forward (Dec 08)
160. Laura Galluppi: Special Olympics champion and rare disease patient (Dec 08)
161. Innovative patient consultation process on RD policies launched by EURORDIS (Nov 08)
162. Is there a need for medical devices to be further regulated? (Nov 08)
163. Important steps towards new EU action for improving access to orphan medicines for all patients in the EU (Nov 08)
164. Living up to your dreams (Nov 08)
165. Rare diseases on the agenda during the French presidency of the EU (Oct 08)
166. Improved understanding of the regulatory process of drug development and clinical trials in Europe (Oct 08)
167. The US passes ground-breaking legislation to fight against genetic discrimination (Oct 08)
168. Reaching out beyond the frontiers (Oct 08)
170. A pioneering residence and activity centre for young adults living with a rare disease: learning from Denmark (July 08)
171. Portrait of a European militant: Björn Håkansson, Swedish thalidomide victim (July 08)
173. The US Orphan Drug Act celebrates its 25th Anniversary (June 08)
174. "Smiles for Moldova": Raising funds for maxillofacial prosthetics (June 08)
175. Michael Griffith: a vision ahead (June 08)
177. Proposal for an EU Directive on Organ Donation and Transplantation: Renewed hope for rare disease patients (May 08)
178. How much is a life worth? How Swedish patients fought to have access to a very expensive orphan drug (May 08)
180. Beyond RAPSODY, EURORDIS’ battle to ensure access to specialised services for rare disease patients (April 08)
181. Eurordis’ On Line Patient Communities come of age (April 08)
182. Two associations, one single battle against rare chromosome disorders (April 08)
186. Structured Multidisciplinary Clinics for Alström Syndrome: a patient-led approach (March 08)
188. European Conference on Rare Diseases Lisbon 2007 (Feb 08)
190. Greece on the way to its own National Plan for Rare Diseases (Feb 08)
191. The Geiser Foundation: Uniting rare disease patient groups in Latin America (Feb 08)
192. 4th Eurordis Survey shows Unequal Access to Orphan Drugs in Europe (January 2008)
193. Preimplantation Genetic Diagnosis and patient mobility (January 2008)
194. Walk around the World for Brain Tumour Patients (January 2008)
195. DEBRA Europe: A pan-European network for Epidermolysis Bullosa (January 2008)
Newsletter articles 2007
074. EurordisCare3 Survey: First Results (Dec 07)
075. Denmark: a focus on social services for rare disease patients (Dec 07)
077. Commission Communication on Rare Diseases (Nov 07)
078. Commission Conference on Rare Disease Research (Nov 07)
079. United Nations Treaty for people living with disabilities (Nov 07)
080. Swiss French and Italian-speaking Muscular Dystrophy patient organisation (ASRIM) (Nov 07)
081. European Conference on Rare Diseases 2007 Lisbon (Oct 07)
082. Prague Workshop on Centres of Expertise and European Reference Networks (Oct 2007)
083. First Rare Disease Conference in Romania (Oct 2007)
085. Needs of patient groups for accessing RD research resources (July 07)
090. Eurordis’ training programme for patient groups (June 07)
091. RehabCare: Irish Centre of respite care services (June 07)
093. Rare diseases in the 7th Research Framework Programme (May 2007)
094. European network of respite care services for rare diseases (May 2007)
Publications
01. Eurordis publications
02. Eurordis position papers
03. The Voice of 12,000 Patients: Experiences & Expectations of Rare Disease Patients on Diagnosis & Care in Europe
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