SlideShare ist ein Scribd-Unternehmen logo
1 von 10
NORD Information Services: Our “Helpline”  ,[object Object],[object Object],[object Object],rarediseases.org Phone  203.744.0100   Fax  203.798.2291 Address   55 Kenosia Avenue, P.O. Box 1968  Danbury, CT 06813-1968
What is NORD? ,[object Object],[object Object],[object Object],[object Object]
Objectives of NORD’s Helpline:  ,[object Object],[object Object],[object Object],[object Object],[object Object]
Profile of Those Who Contact NORD’s Information Service: ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Resources in NORD’s  Information Center ,[object Object],[object Object],[object Object],[object Object],[object Object]
Information Center Staff  ,[object Object],[object Object],[object Object]
Why Do People Contact NORD?  ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
How Do People contact NORD?  ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Target Population  ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Sources of Information:  ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Weitere ähnliche Inhalte

Was ist angesagt?

Medical.Profession Kalabay.Laszlo
Medical.Profession Kalabay.LaszloMedical.Profession Kalabay.Laszlo
Medical.Profession Kalabay.LaszloMedicineAndHealth
 
Tanya Stacey. Wandsworth CCG: Wandsworth Advice forum presentation 28/10/14
Tanya Stacey. Wandsworth CCG: Wandsworth Advice forum presentation 28/10/14Tanya Stacey. Wandsworth CCG: Wandsworth Advice forum presentation 28/10/14
Tanya Stacey. Wandsworth CCG: Wandsworth Advice forum presentation 28/10/14Patrick Torsney
 
Compassion and the Cancer Diagnosis
Compassion and the Cancer DiagnosisCompassion and the Cancer Diagnosis
Compassion and the Cancer DiagnosisGeorge Nicolas Batty
 
Joyce Kenkre - PRIME Annual Meeting 2020
Joyce Kenkre - PRIME Annual Meeting 2020Joyce Kenkre - PRIME Annual Meeting 2020
Joyce Kenkre - PRIME Annual Meeting 2020angewatkins
 
Pulmonary Fibrosis Patient/Caregiver Experience​ Survey
Pulmonary Fibrosis Patient/Caregiver Experience​ SurveyPulmonary Fibrosis Patient/Caregiver Experience​ Survey
Pulmonary Fibrosis Patient/Caregiver Experience​ SurveyInspire
 
Care and Compassion in Nursing
Care and Compassion in NursingCare and Compassion in Nursing
Care and Compassion in NursingYuni Meysya
 
CSH Surrey- Life after stroke workshops- PEN 2015
CSH Surrey- Life after stroke workshops- PEN 2015 CSH Surrey- Life after stroke workshops- PEN 2015
CSH Surrey- Life after stroke workshops- PEN 2015 RuthEvansPEN
 
Palliative Care vs. Hospice Care
Palliative Care vs. Hospice CarePalliative Care vs. Hospice Care
Palliative Care vs. Hospice CareCross Keys Village
 
Concierge Medicine: A Guide for the Risk-Averse Physician
Concierge Medicine: A Guide for the Risk-Averse Physician Concierge Medicine: A Guide for the Risk-Averse Physician
Concierge Medicine: A Guide for the Risk-Averse Physician Specialdocs
 
Voice of the Empowered Patient: An Analysis of the Inspire Annual Survey
Voice of the Empowered Patient:  An Analysis of the Inspire Annual SurveyVoice of the Empowered Patient:  An Analysis of the Inspire Annual Survey
Voice of the Empowered Patient: An Analysis of the Inspire Annual SurveyInspire
 
Advantage of the switching to concierge medicine
Advantage of the switching to concierge medicineAdvantage of the switching to concierge medicine
Advantage of the switching to concierge medicinejayegolard
 
Redesigning methods of psychosocial intervention 2 10 13
Redesigning methods of psychosocial intervention 2 10 13Redesigning methods of psychosocial intervention 2 10 13
Redesigning methods of psychosocial intervention 2 10 13James Coyne
 
8 Ways to Market Your Concierge Medical Practice to Millennials
8 Ways to Market Your Concierge Medical Practice to Millennials8 Ways to Market Your Concierge Medical Practice to Millennials
8 Ways to Market Your Concierge Medical Practice to MillennialsSpecialdocs
 
Peer support and Hepatitis C Treatment
Peer support and Hepatitis C TreatmentPeer support and Hepatitis C Treatment
Peer support and Hepatitis C Treatmentlnnmhomeless
 
Homeless Sexual Health and Blood Borne Virus Outreach service
Homeless Sexual Health and Blood Borne Virus Outreach serviceHomeless Sexual Health and Blood Borne Virus Outreach service
Homeless Sexual Health and Blood Borne Virus Outreach servicelnnmhomeless
 

Was ist angesagt? (20)

Medical.Profession Kalabay.Laszlo
Medical.Profession Kalabay.LaszloMedical.Profession Kalabay.Laszlo
Medical.Profession Kalabay.Laszlo
 
Tanya Stacey. Wandsworth CCG: Wandsworth Advice forum presentation 28/10/14
Tanya Stacey. Wandsworth CCG: Wandsworth Advice forum presentation 28/10/14Tanya Stacey. Wandsworth CCG: Wandsworth Advice forum presentation 28/10/14
Tanya Stacey. Wandsworth CCG: Wandsworth Advice forum presentation 28/10/14
 
cvaldez.professionalresume
cvaldez.professionalresumecvaldez.professionalresume
cvaldez.professionalresume
 
Compassion and the Cancer Diagnosis
Compassion and the Cancer DiagnosisCompassion and the Cancer Diagnosis
Compassion and the Cancer Diagnosis
 
Nursing care plan format
Nursing care plan formatNursing care plan format
Nursing care plan format
 
Joyce Kenkre - PRIME Annual Meeting 2020
Joyce Kenkre - PRIME Annual Meeting 2020Joyce Kenkre - PRIME Annual Meeting 2020
Joyce Kenkre - PRIME Annual Meeting 2020
 
Pulmonary Fibrosis Patient/Caregiver Experience​ Survey
Pulmonary Fibrosis Patient/Caregiver Experience​ SurveyPulmonary Fibrosis Patient/Caregiver Experience​ Survey
Pulmonary Fibrosis Patient/Caregiver Experience​ Survey
 
Care and Compassion in Nursing
Care and Compassion in NursingCare and Compassion in Nursing
Care and Compassion in Nursing
 
CSH Surrey- Life after stroke workshops- PEN 2015
CSH Surrey- Life after stroke workshops- PEN 2015 CSH Surrey- Life after stroke workshops- PEN 2015
CSH Surrey- Life after stroke workshops- PEN 2015
 
Ethnic Notions_poster_final
Ethnic Notions_poster_finalEthnic Notions_poster_final
Ethnic Notions_poster_final
 
Palliative Care vs. Hospice Care
Palliative Care vs. Hospice CarePalliative Care vs. Hospice Care
Palliative Care vs. Hospice Care
 
Concierge Medicine: A Guide for the Risk-Averse Physician
Concierge Medicine: A Guide for the Risk-Averse Physician Concierge Medicine: A Guide for the Risk-Averse Physician
Concierge Medicine: A Guide for the Risk-Averse Physician
 
Voice of the Empowered Patient: An Analysis of the Inspire Annual Survey
Voice of the Empowered Patient:  An Analysis of the Inspire Annual SurveyVoice of the Empowered Patient:  An Analysis of the Inspire Annual Survey
Voice of the Empowered Patient: An Analysis of the Inspire Annual Survey
 
Advantage of the switching to concierge medicine
Advantage of the switching to concierge medicineAdvantage of the switching to concierge medicine
Advantage of the switching to concierge medicine
 
Redesigning methods of psychosocial intervention 2 10 13
Redesigning methods of psychosocial intervention 2 10 13Redesigning methods of psychosocial intervention 2 10 13
Redesigning methods of psychosocial intervention 2 10 13
 
8 Ways to Market Your Concierge Medical Practice to Millennials
8 Ways to Market Your Concierge Medical Practice to Millennials8 Ways to Market Your Concierge Medical Practice to Millennials
8 Ways to Market Your Concierge Medical Practice to Millennials
 
dementia and diversity
dementia and diversitydementia and diversity
dementia and diversity
 
Peer support and Hepatitis C Treatment
Peer support and Hepatitis C TreatmentPeer support and Hepatitis C Treatment
Peer support and Hepatitis C Treatment
 
Hospice tutorial
Hospice tutorialHospice tutorial
Hospice tutorial
 
Homeless Sexual Health and Blood Borne Virus Outreach service
Homeless Sexual Health and Blood Borne Virus Outreach serviceHomeless Sexual Health and Blood Borne Virus Outreach service
Homeless Sexual Health and Blood Borne Virus Outreach service
 

Andere mochten auch

Workshop 2 - "Presentation of the concept, definitions and terminology"
Workshop 2  - "Presentation of the concept, definitions and terminology" Workshop 2  - "Presentation of the concept, definitions and terminology"
Workshop 2 - "Presentation of the concept, definitions and terminology" EURORDIS - Rare Diseases Europe
 
Results of Survey on the role of Patient Groups in Research and their priorit...
Results of Survey on the role of Patient Groups in Research and their priorit...Results of Survey on the role of Patient Groups in Research and their priorit...
Results of Survey on the role of Patient Groups in Research and their priorit...EURORDIS - Rare Diseases Europe
 
Conference 5 - “Patient’s Experience in the Development and Implementation of...
Conference 5 - “Patient’s Experience in the Development and Implementation of...Conference 5 - “Patient’s Experience in the Development and Implementation of...
Conference 5 - “Patient’s Experience in the Development and Implementation of...EURORDIS - Rare Diseases Europe
 
Update on the Mysasthenia Gravis community on RareConnect.org
Update on the Mysasthenia Gravis community on RareConnect.orgUpdate on the Mysasthenia Gravis community on RareConnect.org
Update on the Mysasthenia Gravis community on RareConnect.orgEURORDIS - Rare Diseases Europe
 
Using the internet to search for clinical trial information
Using the internet to search for clinical trial informationUsing the internet to search for clinical trial information
Using the internet to search for clinical trial informationEURORDIS - Rare Diseases Europe
 
RareConnect.org - Connecting Rare Disease Patients Globally
RareConnect.org - Connecting Rare Disease Patients GloballyRareConnect.org - Connecting Rare Disease Patients Globally
RareConnect.org - Connecting Rare Disease Patients GloballyEURORDIS - Rare Diseases Europe
 
Workshop 4 - "Feedback from the 15 National Conferences on Research policy"
Workshop 4 - "Feedback from the 15 National Conferences on Research policy"Workshop 4 - "Feedback from the 15 National Conferences on Research policy"
Workshop 4 - "Feedback from the 15 National Conferences on Research policy"EURORDIS - Rare Diseases Europe
 

Andere mochten auch (18)

Workshop 2 - "Presentation of the concept, definitions and terminology"
Workshop 2  - "Presentation of the concept, definitions and terminology" Workshop 2  - "Presentation of the concept, definitions and terminology"
Workshop 2 - "Presentation of the concept, definitions and terminology"
 
Session 3 christina_rusu
Session 3 christina_rusuSession 3 christina_rusu
Session 3 christina_rusu
 
AMWS CINCA
AMWS CINCA AMWS CINCA
AMWS CINCA
 
Results of Survey on the role of Patient Groups in Research and their priorit...
Results of Survey on the role of Patient Groups in Research and their priorit...Results of Survey on the role of Patient Groups in Research and their priorit...
Results of Survey on the role of Patient Groups in Research and their priorit...
 
Conference 5 - “Patient’s Experience in the Development and Implementation of...
Conference 5 - “Patient’s Experience in the Development and Implementation of...Conference 5 - “Patient’s Experience in the Development and Implementation of...
Conference 5 - “Patient’s Experience in the Development and Implementation of...
 
Session 25 antoni_montserrat
Session 25 antoni_montserratSession 25 antoni_montserrat
Session 25 antoni_montserrat
 
Session 13 sophie_koutouzov
Session 13 sophie_koutouzovSession 13 sophie_koutouzov
Session 13 sophie_koutouzov
 
Surveys and polls: The RareConnect.org Experience
Surveys and polls: The RareConnect.org ExperienceSurveys and polls: The RareConnect.org Experience
Surveys and polls: The RareConnect.org Experience
 
Conference 3 "Outcomes of 15 National Conferences, "
Conference 3   "Outcomes of 15 National Conferences, "Conference 3   "Outcomes of 15 National Conferences, "
Conference 3 "Outcomes of 15 National Conferences, "
 
Update on the Mysasthenia Gravis community on RareConnect.org
Update on the Mysasthenia Gravis community on RareConnect.orgUpdate on the Mysasthenia Gravis community on RareConnect.org
Update on the Mysasthenia Gravis community on RareConnect.org
 
Session 3 yann_le_cam
Session 3 yann_le_camSession 3 yann_le_cam
Session 3 yann_le_cam
 
Using the internet to search for clinical trial information
Using the internet to search for clinical trial informationUsing the internet to search for clinical trial information
Using the internet to search for clinical trial information
 
Updates to RareConnect.org in 2014
Updates to RareConnect.org in 2014Updates to RareConnect.org in 2014
Updates to RareConnect.org in 2014
 
Session 8 bruno_dallapiccola
Session 8 bruno_dallapiccolaSession 8 bruno_dallapiccola
Session 8 bruno_dallapiccola
 
RareConnect.org - Connecting Rare Disease Patients Globally
RareConnect.org - Connecting Rare Disease Patients GloballyRareConnect.org - Connecting Rare Disease Patients Globally
RareConnect.org - Connecting Rare Disease Patients Globally
 
The Value of Online Communities
The Value of Online CommunitiesThe Value of Online Communities
The Value of Online Communities
 
Workshop 4 - "Feedback from the 15 National Conferences on Research policy"
Workshop 4 - "Feedback from the 15 National Conferences on Research policy"Workshop 4 - "Feedback from the 15 National Conferences on Research policy"
Workshop 4 - "Feedback from the 15 National Conferences on Research policy"
 
Session 21 progeria family circle ppt krakow +
Session 21 progeria family circle ppt krakow +Session 21 progeria family circle ppt krakow +
Session 21 progeria family circle ppt krakow +
 

Ähnlich wie Session 21 peter_saltonstall

Nord online class 6.27.12
Nord online class 6.27.12Nord online class 6.27.12
Nord online class 6.27.12Vtcheerlder
 
Online patients: characteristics and behaviour on health social networks - fe...
Online patients: characteristics and behaviour on health social networks - fe...Online patients: characteristics and behaviour on health social networks - fe...
Online patients: characteristics and behaviour on health social networks - fe...Ricardo Sousa
 
Shared decision making: Changing the relationship between doctor and patient
Shared decision making: Changing the relationship between doctor and patientShared decision making: Changing the relationship between doctor and patient
Shared decision making: Changing the relationship between doctor and patientMarkus Oei
 
Improving Health Care for Foreigners in Japan: Stories, Data and Policy Models
Improving Health Care for Foreigners in Japan: Stories, Data and Policy ModelsImproving Health Care for Foreigners in Japan: Stories, Data and Policy Models
Improving Health Care for Foreigners in Japan: Stories, Data and Policy ModelsJulia Puebla Fortier
 
AzCI presents: Working with Your Demographic Market (in Orphan Drug Development)
AzCI presents: Working with Your Demographic Market (in Orphan Drug Development)AzCI presents: Working with Your Demographic Market (in Orphan Drug Development)
AzCI presents: Working with Your Demographic Market (in Orphan Drug Development)AnitaBell
 
Advancing Effective Communicationcommunication, Cultural...
Advancing Effective Communicationcommunication, Cultural...Advancing Effective Communicationcommunication, Cultural...
Advancing Effective Communicationcommunication, Cultural...Beth Johnson
 
DR Prep Talk--Medical Service
DR Prep Talk--Medical ServiceDR Prep Talk--Medical Service
DR Prep Talk--Medical ServiceMark Ryan
 
Inside the World of Pediatric Healthcare Advocacy
Inside the World of Pediatric Healthcare AdvocacyInside the World of Pediatric Healthcare Advocacy
Inside the World of Pediatric Healthcare AdvocacyPatient_Navigator
 
Reasons for Disparities in Health and HealthCare
Reasons for Disparities in Health and HealthCareReasons for Disparities in Health and HealthCare
Reasons for Disparities in Health and HealthCareYiscah Bracha
 
Population disparities in health & health care
Population disparities in health & health carePopulation disparities in health & health care
Population disparities in health & health caregueste165460
 
viewpoints_red_gray_v2
viewpoints_red_gray_v2viewpoints_red_gray_v2
viewpoints_red_gray_v2Patty Baraibar
 
Gw unity feb_09
Gw unity feb_09Gw unity feb_09
Gw unity feb_09acatanzaro
 
Rare Solid Cancers: An Introduction - Slide 5 - J. Geissler - Patient advocac...
Rare Solid Cancers: An Introduction - Slide 5 - J. Geissler - Patient advocac...Rare Solid Cancers: An Introduction - Slide 5 - J. Geissler - Patient advocac...
Rare Solid Cancers: An Introduction - Slide 5 - J. Geissler - Patient advocac...European School of Oncology
 
Information Therapy and the Empowered Patient
Information Therapy  and the Empowered PatientInformation Therapy  and the Empowered Patient
Information Therapy and the Empowered PatientDr Aniruddha Malpani
 
Information Therapy and the Empowered Patient
Information Therapy and the Empowered PatientInformation Therapy and the Empowered Patient
Information Therapy and the Empowered PatientDr Aniruddha Malpani
 
Clanon
ClanonClanon
ClanonDSHS
 

Ähnlich wie Session 21 peter_saltonstall (20)

Nord online class 6.27.12
Nord online class 6.27.12Nord online class 6.27.12
Nord online class 6.27.12
 
Online patients: characteristics and behaviour on health social networks - fe...
Online patients: characteristics and behaviour on health social networks - fe...Online patients: characteristics and behaviour on health social networks - fe...
Online patients: characteristics and behaviour on health social networks - fe...
 
Shared decision making: Changing the relationship between doctor and patient
Shared decision making: Changing the relationship between doctor and patientShared decision making: Changing the relationship between doctor and patient
Shared decision making: Changing the relationship between doctor and patient
 
HD Care Models
HD Care ModelsHD Care Models
HD Care Models
 
Improving Health Care for Foreigners in Japan: Stories, Data and Policy Models
Improving Health Care for Foreigners in Japan: Stories, Data and Policy ModelsImproving Health Care for Foreigners in Japan: Stories, Data and Policy Models
Improving Health Care for Foreigners in Japan: Stories, Data and Policy Models
 
AzCI presents: Working with Your Demographic Market (in Orphan Drug Development)
AzCI presents: Working with Your Demographic Market (in Orphan Drug Development)AzCI presents: Working with Your Demographic Market (in Orphan Drug Development)
AzCI presents: Working with Your Demographic Market (in Orphan Drug Development)
 
Advancing Effective Communicationcommunication, Cultural...
Advancing Effective Communicationcommunication, Cultural...Advancing Effective Communicationcommunication, Cultural...
Advancing Effective Communicationcommunication, Cultural...
 
Pathfinder Workshop
Pathfinder WorkshopPathfinder Workshop
Pathfinder Workshop
 
DR Prep Talk--Medical Service
DR Prep Talk--Medical ServiceDR Prep Talk--Medical Service
DR Prep Talk--Medical Service
 
Inside the World of Pediatric Healthcare Advocacy
Inside the World of Pediatric Healthcare AdvocacyInside the World of Pediatric Healthcare Advocacy
Inside the World of Pediatric Healthcare Advocacy
 
Reasons for Disparities in Health and HealthCare
Reasons for Disparities in Health and HealthCareReasons for Disparities in Health and HealthCare
Reasons for Disparities in Health and HealthCare
 
Population disparities in health & health care
Population disparities in health & health carePopulation disparities in health & health care
Population disparities in health & health care
 
viewpoints_red_gray_v2
viewpoints_red_gray_v2viewpoints_red_gray_v2
viewpoints_red_gray_v2
 
Gw unity feb_09
Gw unity feb_09Gw unity feb_09
Gw unity feb_09
 
Rare Solid Cancers: An Introduction - Slide 5 - J. Geissler - Patient advocac...
Rare Solid Cancers: An Introduction - Slide 5 - J. Geissler - Patient advocac...Rare Solid Cancers: An Introduction - Slide 5 - J. Geissler - Patient advocac...
Rare Solid Cancers: An Introduction - Slide 5 - J. Geissler - Patient advocac...
 
Board of Governors Meeting, New Orleans
Board of Governors Meeting, New OrleansBoard of Governors Meeting, New Orleans
Board of Governors Meeting, New Orleans
 
Information Therapy and the Empowered Patient
Information Therapy  and the Empowered PatientInformation Therapy  and the Empowered Patient
Information Therapy and the Empowered Patient
 
Information Therapy and the Empowered Patient
Information Therapy and the Empowered PatientInformation Therapy and the Empowered Patient
Information Therapy and the Empowered Patient
 
Information Therapy
Information TherapyInformation Therapy
Information Therapy
 
Clanon
ClanonClanon
Clanon
 

Mehr von EURORDIS - Rare Diseases Europe

RareConnect.org webinar How to use Twitter to build your online rare disease ...
RareConnect.org webinar How to use Twitter to build your online rare disease ...RareConnect.org webinar How to use Twitter to build your online rare disease ...
RareConnect.org webinar How to use Twitter to build your online rare disease ...EURORDIS - Rare Diseases Europe
 
RareConnect.org webinar: How to start an awareness day for your rare disease
RareConnect.org webinar: How to start an awareness day for your rare diseaseRareConnect.org webinar: How to start an awareness day for your rare disease
RareConnect.org webinar: How to start an awareness day for your rare diseaseEURORDIS - Rare Diseases Europe
 
Results of Survey on the role of Patient Groups in Research and their priorit...
Results of Survey on the role of Patient Groups in Research and their priorit...Results of Survey on the role of Patient Groups in Research and their priorit...
Results of Survey on the role of Patient Groups in Research and their priorit...EURORDIS - Rare Diseases Europe
 
Results of a survey on the role of Patient Groups in Research and their prio...
Results of a survey on the role of Patient Groups in Research and their prio...Results of a survey on the role of Patient Groups in Research and their prio...
Results of a survey on the role of Patient Groups in Research and their prio...EURORDIS - Rare Diseases Europe
 
Conference 1 - EURORDIS’ recommendations for National Plans, Yann le Cam, EUR...
Conference 1 - EURORDIS’ recommendations for National Plans, Yann le Cam, EUR...Conference 1 - EURORDIS’ recommendations for National Plans, Yann le Cam, EUR...
Conference 1 - EURORDIS’ recommendations for National Plans, Yann le Cam, EUR...EURORDIS - Rare Diseases Europe
 
Workshop 1 - "The EU tender on Newborn Screening for rare disordersin Europe"
Workshop 1 - "The EU tender on Newborn Screening for rare disordersin Europe" Workshop 1 - "The EU tender on Newborn Screening for rare disordersin Europe"
Workshop 1 - "The EU tender on Newborn Screening for rare disordersin Europe" EURORDIS - Rare Diseases Europe
 
Workshop 7 - "EUROCAT Study on Prevention of Congenital Anomalies"
Workshop 7 - "EUROCAT Study on Prevention of Congenital Anomalies"Workshop 7 - "EUROCAT Study on Prevention of Congenital Anomalies"
Workshop 7 - "EUROCAT Study on Prevention of Congenital Anomalies"EURORDIS - Rare Diseases Europe
 
Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop"
Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop"Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop"
Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop"EURORDIS - Rare Diseases Europe
 
Workshop 3 - "Presentation of the concept, definitions and terminology"
Workshop 3 - "Presentation of the concept, definitions and terminology"Workshop 3 - "Presentation of the concept, definitions and terminology"
Workshop 3 - "Presentation of the concept, definitions and terminology"EURORDIS - Rare Diseases Europe
 
Conference 4 - The patient experience in the development and implementation ...
Conference 4 - The patient experience  in the development and implementation ...Conference 4 - The patient experience  in the development and implementation ...
Conference 4 - The patient experience in the development and implementation ...EURORDIS - Rare Diseases Europe
 
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, ...
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, ...Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, ...
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, ...EURORDIS - Rare Diseases Europe
 
Workshop 2- "Feedback from the 15 National Conferences on Centres of Expertise"
Workshop 2- "Feedback from the 15 National Conferences on Centres of Expertise"Workshop 2- "Feedback from the 15 National Conferences on Centres of Expertise"
Workshop 2- "Feedback from the 15 National Conferences on Centres of Expertise"EURORDIS - Rare Diseases Europe
 
Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop on registries"
Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop on registries"Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop on registries"
Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop on registries"EURORDIS - Rare Diseases Europe
 
Workshop 4 - "Presentation of the RD Platform fact finding study on the trend...
Workshop 4 - "Presentation of the RD Platform fact finding study on the trend...Workshop 4 - "Presentation of the RD Platform fact finding study on the trend...
Workshop 4 - "Presentation of the RD Platform fact finding study on the trend...EURORDIS - Rare Diseases Europe
 

Mehr von EURORDIS - Rare Diseases Europe (20)

RareConnect.org webinar How to use Twitter to build your online rare disease ...
RareConnect.org webinar How to use Twitter to build your online rare disease ...RareConnect.org webinar How to use Twitter to build your online rare disease ...
RareConnect.org webinar How to use Twitter to build your online rare disease ...
 
RareConnect.org Update 2016
RareConnect.org Update 2016RareConnect.org Update 2016
RareConnect.org Update 2016
 
RareConnect.org webinar: How to start an awareness day for your rare disease
RareConnect.org webinar: How to start an awareness day for your rare diseaseRareConnect.org webinar: How to start an awareness day for your rare disease
RareConnect.org webinar: How to start an awareness day for your rare disease
 
Living with TRAPS poll results
Living with TRAPS poll resultsLiving with TRAPS poll results
Living with TRAPS poll results
 
Pitt Hopkins syndrome community on RareConnect.org
Pitt Hopkins syndrome community on RareConnect.orgPitt Hopkins syndrome community on RareConnect.org
Pitt Hopkins syndrome community on RareConnect.org
 
Rare disease day 2011 highlights
Rare disease day 2011 highlightsRare disease day 2011 highlights
Rare disease day 2011 highlights
 
Results of Survey on the role of Patient Groups in Research and their priorit...
Results of Survey on the role of Patient Groups in Research and their priorit...Results of Survey on the role of Patient Groups in Research and their priorit...
Results of Survey on the role of Patient Groups in Research and their priorit...
 
Results of a survey on the role of Patient Groups in Research and their prio...
Results of a survey on the role of Patient Groups in Research and their prio...Results of a survey on the role of Patient Groups in Research and their prio...
Results of a survey on the role of Patient Groups in Research and their prio...
 
Conference 1 - EURORDIS’ recommendations for National Plans, Yann le Cam, EUR...
Conference 1 - EURORDIS’ recommendations for National Plans, Yann le Cam, EUR...Conference 1 - EURORDIS’ recommendations for National Plans, Yann le Cam, EUR...
Conference 1 - EURORDIS’ recommendations for National Plans, Yann le Cam, EUR...
 
Workshop 1 - "The EU tender on Newborn Screening for rare disordersin Europe"
Workshop 1 - "The EU tender on Newborn Screening for rare disordersin Europe" Workshop 1 - "The EU tender on Newborn Screening for rare disordersin Europe"
Workshop 1 - "The EU tender on Newborn Screening for rare disordersin Europe"
 
Workshop 7 - "EUROCAT Study on Prevention of Congenital Anomalies"
Workshop 7 - "EUROCAT Study on Prevention of Congenital Anomalies"Workshop 7 - "EUROCAT Study on Prevention of Congenital Anomalies"
Workshop 7 - "EUROCAT Study on Prevention of Congenital Anomalies"
 
Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop"
Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop"Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop"
Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop"
 
Workshop 3 - "Presentation of the Epi-Rare project"
Workshop 3 - "Presentation of the Epi-Rare project"Workshop 3 - "Presentation of the Epi-Rare project"
Workshop 3 - "Presentation of the Epi-Rare project"
 
Workshop 3 - "Presentation of the concept, definitions and terminology"
Workshop 3 - "Presentation of the concept, definitions and terminology"Workshop 3 - "Presentation of the concept, definitions and terminology"
Workshop 3 - "Presentation of the concept, definitions and terminology"
 
Conference 4 - The patient experience in the development and implementation ...
Conference 4 - The patient experience  in the development and implementation ...Conference 4 - The patient experience  in the development and implementation ...
Conference 4 - The patient experience in the development and implementation ...
 
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, ...
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, ...Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, ...
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, ...
 
Workshop 2- "Feedback from the 15 National Conferences on Centres of Expertise"
Workshop 2- "Feedback from the 15 National Conferences on Centres of Expertise"Workshop 2- "Feedback from the 15 National Conferences on Centres of Expertise"
Workshop 2- "Feedback from the 15 National Conferences on Centres of Expertise"
 
Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop on registries"
Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop on registries"Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop on registries"
Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop on registries"
 
Workshop 4 - "EURORDIS Research Policy recommendation"
Workshop 4 - "EURORDIS Research Policy recommendation"Workshop 4 - "EURORDIS Research Policy recommendation"
Workshop 4 - "EURORDIS Research Policy recommendation"
 
Workshop 4 - "Presentation of the RD Platform fact finding study on the trend...
Workshop 4 - "Presentation of the RD Platform fact finding study on the trend...Workshop 4 - "Presentation of the RD Platform fact finding study on the trend...
Workshop 4 - "Presentation of the RD Platform fact finding study on the trend...
 

Session 21 peter_saltonstall

  • 1.
  • 2.
  • 3.
  • 4.
  • 5.
  • 6.
  • 7.
  • 8.
  • 9.
  • 10.