| https://www.eurordis.org/ | Anchor | Skip to content |
| /accessibility-options/ | Subdomain | Accessibility Options |
| https://www.eurordis.org/ | Subdomain | English |
| https://www.eurordis.org/es/ | Subdomain | Español |
| https://www.eurordis.org/de/ | Subdomain | Deutsch |
| https://www.eurordis.org/fr/ | Subdomain | Français |
| https://www.eurordis.org/it/ | Subdomain | Italiano |
| https://www.eurordis.org/pt-pt/ | Subdomain | Português |
| https://www.eurordis.org/ru/ | Subdomain | Русский |
| /category/newsroom/ | Subdomain | Newsroom |
| /multimedia/ | Subdomain | Multimedia |
| /category/events/ | Subdomain | Events |
| /who-we-are/our-members/ | Subdomain | Members |
| /resources/ | Subdomain | Resources |
| /contact-us/ | Subdomain | Contact us |
| https://www.eurordis.org/ | Subdomain | IMG-ALT Eurordis logo |
| /our-vision-mission | | Who We Are |
| https://www.eurordis.org/donate | Subdomain | Donate |
| /who-we-are/our-vision-mission/ | Subdomain | About EURORDIS |
| /who-we-are/our-history/ | Subdomain | History |
| /who-we-are/staff/ | Subdomain | Team |
| /who-we-are/initiatives-progra... | Subdomain | Initiatives |
| /who-we-are/projects-and-partn... | Subdomain | Projects & Partnerships |
| /external-representation/ | Subdomain | Governance Charts & External Representation |
| /who-we-are/board-of-directors/ | Subdomain | Board of Directors |
| /who-we-are/our-strategy-impact/ | Subdomain | Strategy & Impact |
| /who-we-are/our-funding/ | Subdomain | Funding |
| /who-we-are/annual-reports-wor... | Subdomain | Annual Reports, Statutes & By-Laws |
| /who-we-are/our-members/ | Subdomain Textduplikat | Members |
| /who-we-are/our-members/nation... | Subdomain | National Alliances |
| /who-we-are/our-members/europe... | Subdomain | European Federations |
| /who-we-are/volunteers/ | Subdomain | Volunteers |
| /rare-disease-policy/ | Subdomain | Setting the Agenda |
| /rare-disease-policy/mobilisin... | Subdomain | Mobilising Policymakers |
| /rare-disease-policy/engaging-... | Subdomain | Engaging the Community |
| /actrare2024/ | Subdomain | European Elections 2024 |
| /rare-disease-policy/30-millio... | Subdomain | European Action Plan |
| /our-priorities/diagnosis/ | Subdomain | Diagnosis |
| /our-priorities/research/ | Subdomain | Research |
| /our-priorities/holistic-care/ | Subdomain | Holistic Care |
| /our-priorities/treatments/ | Subdomain | Treatments |
| /our-priorities/data-and-digit... | Subdomain | Data and Digital Health |
| /mental-wellbeing/ | Subdomain | Mental Health & Wellbeing |
| /our-priorities/european-refer... | Subdomain | European Reference Networks |
| /our-priorities/eurordis-ukrai... | Subdomain | EURORDIS Ukraine Response |
| /our-priorities/rare-cancers/ | Subdomain | Rare Cancers |
| /information-support/what-is-a... | Subdomain | What is a Rare Disease? |
| /information-support/on-your-d... | Subdomain | Information on your Rare Disease |
| /information-support/rare-dise... | Subdomain | Rare Diseases in the Arts |
| /rare-disease-personal-stories/ | | Personal Stories |
| /survey-design-toolkit/ | Subdomain | Survey Design Toolkit for Patient Organisations |
| /information-support/find-info... | Subdomain | FAQ: Rare Disease Medicines |
| /information-support/list-of-t... | Subdomain | List of the Marketing Authorisations |
| /information-support/find-info... | Subdomain Anchor | Getting Involved in Medicine Development |
| /information-support/find-a-pa... | Subdomain | Connect with a Patient Organisation |
| /information-support/rare-dise... | Subdomain | Contact Rare Disease Helplines |
| /information-support/find-medi... | Subdomain | Find Medical Expertise |
| /get-involved/become-a-member/ | Subdomain | Become a Member |
| /get-involved/join-the-eurordi... | Subdomain | Join the EURORDIS Round Table of Companies |
| /rare-disease-policy/european-... | Subdomain | Become a Parliamentary Advocate |
| /support-eurordis/ | | Support EURORDIS |
| /get-involved/jobs/ | | Careers |
| https://openacademy.eurordis.org/ | Extern Subdomain | EURORDIS Open Academy |
| /rare-disease-policy/european-... | Subdomain | Rare Disease Week |
| /rare-barometer/english/ | Subdomain | Rare Barometer |
| https://www.rarediseaseday.org/ | Extern Subdomain | Rare Disease Day |
| /category/events/ | Subdomain | Attend Our Events |
| /black-pearl-awards/ | Subdomain | Black Pearl Awards |
| https://www.rare-diseases.eu/ | Extern Subdomain | European Conference on Rare Diseases (ECRD) |
| /who-we-are/our-members/eurord... | Subdomain | Membership Meeting |
| /our-vision-mission | Textduplikat | Who We Are |
| /who-we-are/our-vision-mission/ | Subdomain Textduplikat | About EURORDIS |
| /who-we-are/our-history/ | Subdomain Textduplikat | History |
| /who-we-are/staff/ | Subdomain Textduplikat | Team |
| /who-we-are/initiatives-progra... | Subdomain Textduplikat | Initiatives |
| /who-we-are/projects-and-partn... | Subdomain Textduplikat | Projects & Partnerships |
| /external-representation/ | Subdomain Textduplikat | Governance Charts & External Representation |
| /who-we-are/board-of-directors/ | Subdomain Textduplikat | Board of Directors |
| /who-we-are/our-strategy-impact/ | Subdomain Textduplikat | Strategy & Impact |
| /who-we-are/our-funding/ | Subdomain Textduplikat | Funding |
| /who-we-are/annual-reports-wor... | Subdomain Textduplikat | Annual Reports, Statutes & By-Laws |
| /who-we-are/our-members/ | Subdomain Textduplikat | Members |
| /who-we-are/our-members/nation... | Subdomain Textduplikat | National Alliances |
| /who-we-are/our-members/europe... | Subdomain Textduplikat | European Federations |
| /who-we-are/volunteers/ | Subdomain Textduplikat | Volunteers |
| /rare-disease-policy/ | Subdomain Textduplikat | Setting the Agenda |
| /rare-disease-policy/mobilisin... | Subdomain Textduplikat | Mobilising Policymakers |
| /rare-disease-policy/engaging-... | Subdomain Textduplikat | Engaging the Community |
| /actrare2024/ | Subdomain Textduplikat | European Elections 2024 |
| /rare-disease-policy/30-millio... | Subdomain Textduplikat | European Action Plan |
| /our-priorities/diagnosis/ | Subdomain Textduplikat | Diagnosis |
| /our-priorities/research/ | Subdomain Textduplikat | Research |
| /our-priorities/holistic-care/ | Subdomain Textduplikat | Holistic Care |
| /our-priorities/treatments/ | Subdomain Textduplikat | Treatments |
| /our-priorities/data-and-digit... | Subdomain Textduplikat | Data and Digital Health |
| /mental-wellbeing/ | Subdomain Textduplikat | Mental Health & Wellbeing |
| /our-priorities/european-refer... | Subdomain Textduplikat | European Reference Networks |
| /our-priorities/eurordis-ukrai... | Subdomain Textduplikat | EURORDIS Ukraine Response |
| /our-priorities/rare-cancers/ | Subdomain Textduplikat | Rare Cancers |
| /information-support/what-is-a... | Subdomain Textduplikat | What is a Rare Disease? |
| /information-support/on-your-d... | Subdomain Textduplikat | Information on your Rare Disease |
| /information-support/rare-dise... | Subdomain Textduplikat | Rare Diseases in the Arts |
| /rare-disease-personal-stories/ | Textduplikat | Personal Stories |
| /survey-design-toolkit/ | Subdomain Textduplikat | Survey Design Toolkit for Patient Organisations |
| /information-support/find-info... | Subdomain Textduplikat | FAQ: Rare Disease Medicines |
| /information-support/list-of-t... | Subdomain Textduplikat | List of the Marketing Authorisations |
| /information-support/find-info... | Subdomain Anchor Textduplikat | Getting Involved in Medicine Development |
| /information-support/find-a-pa... | Subdomain Textduplikat | Connect with a Patient Organisation |
| /information-support/rare-dise... | Subdomain Textduplikat | Contact Rare Disease Helplines |
| /information-support/find-medi... | Subdomain Textduplikat | Find Medical Expertise |
| /get-involved/become-a-member/ | Subdomain Textduplikat | Become a Member |
| /get-involved/join-the-eurordi... | Subdomain Textduplikat | Join the EURORDIS Round Table of Companies |
| /rare-disease-policy/european-... | Subdomain Textduplikat | Become a Parliamentary Advocate |
| /support-eurordis/ | Textduplikat | Support EURORDIS |
| /get-involved/jobs/ | Textduplikat | Careers |
| https://openacademy.eurordis.org/ | Extern Subdomain Textduplikat | EURORDIS Open Academy |
| /rare-disease-policy/european-... | Subdomain Textduplikat | Rare Disease Week |
| /rare-barometer/english/ | Subdomain Textduplikat | Rare Barometer |
| https://www.rarediseaseday.org/ | Extern Subdomain Textduplikat | Rare Disease Day |
| /category/events/ | Subdomain Textduplikat | Attend Our Events |
| /black-pearl-awards/ | Subdomain Textduplikat | Black Pearl Awards |
| https://www.rare-diseases.eu/ | Extern Subdomain Textduplikat | European Conference on Rare Diseases (ECRD) |
| /who-we-are/our-members/eurord... | Subdomain Textduplikat | Membership Meeting |
| /category/newsroom/news/ | Subdomain | News
A-TITLE News |
| /category/events/ | Subdomain Textduplikat | Events
A-TITLE Events |
| /who-we-are/our-members/ | Subdomain Textduplikat | Members
A-TITLE Members |
| /resources/ | Subdomain Textduplikat | Resources
A-TITLE Resources |
| /contact-us/ | Subdomain Textduplikat | Contact us
A-TITLE Contact us |
| /accessibility-options/ | Subdomain Textduplikat | Accessibility Options
A-TITLE Accessibility Options |
| https://www.eurordis.org/ | Subdomain Textduplikat | English |
| https://www.eurordis.org/es/ | Subdomain Textduplikat | Español |
| https://www.eurordis.org/de/ | Subdomain Textduplikat | Deutsch |
| https://www.eurordis.org/fr/ | Subdomain Textduplikat | Français |
| https://www.eurordis.org/it/ | Subdomain Textduplikat | Italiano |
| https://www.eurordis.org/pt-pt/ | Subdomain Textduplikat | Português |
| https://www.eurordis.org/ru/ | Subdomain Textduplikat | Русский |
| https://www.eurordis.org/donate | Subdomain Textduplikat | Donate |
| /rare-barometer-launches-surve... | Subdomain | Rare Barometer survey on social participation Take the survey |
| /black-pearl-awards/nomination/ | Subdomain | Nominations open for 2025 Black Pearl Awards Nominate now! |
| /rare-on-air/ | | Rare on Air podcast Listen now |
| /10-minutes-with/ | Subdomain | 10 Minutes With... Watch now |
| /category/newsroom/ | Subdomain | View all news |
| /category/events/ | Subdomain | View all events |
| /open-letter-presented-to-euro... | Subdomain | NewsOpen Letter signed by thousands across rare disease community presented to European Commission 23 July 2024, Brussels – EURORDIS-Rare Diseases Europe has... |
| /black-pearl-awards-over-the-y... | Subdomain | NewsNights to remember: the Black Pearl Awards over the years Since 2012, the Black Pearl Awards have honoured the outstanding achievements of the rare disea... |
| /rare-barometer-launches-surve... | Subdomain | NewsRare Barometer survey launched on rare diseases and social participation Rare Barometer, the survey initiative of EURORDIS has launched a new global surv... |
| /eurordis-welcomes-epsco-call/ | Subdomain | Press releaseEURORDIS welcomes EPSCO call for inclusion of health priorities in EU Strategic AgendaEURORDIS responds to the unanimous conclusions reached by ... |
| /eu4health-must-recognise-adde... | Subdomain | Press releaseEURORDIS: EU4Health must recognise added value of EU action on rare diseasesEURORDIS urges the European Commission to address rare diseases in t... |
| /european-parliament-elections... | Subdomain | NewsEuropean Parliament Elections 2024: What They Mean for Rare Disease Advocacy This year’s elections have brought about changes that will undoubtedly impac... |
| /who-we-are/our-members/ | | 74 countries View more |
| /european-or-international-fed... | | 80 European federations of specific rare diseases View more |
| /national-alliances-for-rare-d... | | 55 National alliances of rare disease patient organisations View more |
| /who-we-are/our-members/ | | 1,000 +member patient organisations View more |
| /information-support/find-a-pa... | | Image ALT text Outreach to over2,500patient groups View more |
| /who-we-are/volunteers/ | | Image ALT text over 400volunteers View more |
| /who-we-are/our-members/ | | 74 countries |
| /european-or-international-fed... | | 80 European federations of specific rare diseases |
| /national-alliances-for-rare-d... | | 55 National alliances of rare disease patient organisations |
| /who-we-are/our-members/ | | 1,000 +member patient organisations |
| /information-support/find-a-pa... | | Outreach to over2,500patient groups |
| /who-we-are/volunteers/ | | over 400volunteers |
| /get-involved/become-a-member/ | Subdomain | Become a member |
| /who-we-are/our-members/ | Subdomain | Our members |
| /category/events/?keywordSearc... | Subdomain | Members events |
| /newsletter-signup/ | | Subscribe |
| https://www.facebook.com/eurordis | Neues Fenster Extern Subdomain | Facebook |
| https://twitter.com/eurordis | Neues Fenster Extern | Twitter |
| https://www.instagram.com/euro... | Neues Fenster Extern Subdomain | Instagram |
| https://www.linkedin.com/compa... | Neues Fenster Extern Subdomain | LinkedIn |
| /contact-us | | IMG-ALT Our offices |
| /who-we-are/our-vision-mission/ | | Who we are? |
| /rare-disease-policy/ | | Our priorities |
| /information-support/what-is-a... | | Information & Support |
| /support-eurordis/ | | Get Involved |
| /category/news/ | Textduplikat | News |
| /category/events/ | Textduplikat | Events |
| /who-we-are/our-members/ | Textduplikat | Members |
| /resources/ | Textduplikat | Resources |
| /contact-us/ | Textduplikat | Contact us |
| /cookie-policy/ | Subdomain | Cookie Policy |
| /privacy-policy/ | Subdomain | Privacy Policy |
| /terms-conditions/ | Subdomain | Terms & Conditions |
Meta Title
(Nice to have)