Early access in rare disease

Re-sharing Clinigen Digital Spotlight Content – New Social Media copy: 

Facebook/Linkedin/Instagram: 

1. What happens when a patient can’t access vital treatments for their rare disease? In this article Kieron Lewis, director of strategic consulting @Clinigen tells us about the importance of Early Access Programmes in the rare disease space and how early access routes can offer new therapeutic options to patients.  http://bit.ly/DSEarlyAccessEssentials 

#EarlyAccess #ExpandedAccess #RareDisease

2. ‘‘The challenges in access to treatment can have a serious impact on outcomes and patients’ overall quality of life. The only hope for patients who cannot access treatment via a clinical trial is through early access routes that allow the treating clinician to consider an unlicensed or investigational medicine.’’ Kieron Lewis, director of strategic consulting @Clinigen. Find out more about early access here:  http://bit.ly/DSEarlyAccessEssentials  

#EarlyAccess #ExpandedAccess #RareDisease

Twitter:  

1. Kieron Lewis, director of strategic consulting at @Clinigen tells us about the importance of Early Access Programmes in the rare disease space and how early access routes can offer new therapeutic options to patients.  http://bit.ly/DSEarlyAccessEssentials 

#Patients #Treatments #Research #EarlyAccess #RareDisease 

2. ‘The challenges in access to treatment can have a serious impact on outcomes and patients’ overall quality of life. The only hope for patients who cannot access treatment via a clinical trial is through early access routes.’ Learn more about #EarlyAccess:

http://bit.ly/DSEarlyAccessEssentials 

Facebook, Linkedin, Instagram: 

1.‘Patient engagement driving success in Early Access Programmes’ delves into the importance of patients having an active voice in conversations with all stakeholders throughout the early access journey. Find out how Dr Nicole Gusset of @SMA Europe is passionate about #PatientEngagement in #EarlyAccess http://bit.ly/DSEarlyAccessSuccess 

2.Dr Nicole Gusset of @ SMA Europe believes that experience and determination are the foundations of shaping a powerful #advocate and that, ‘We need evidence as the basis for our advocacy tools and arguments, and emotions as our engine.’ Find out how Nicole advocates for patient engagement in #EarlyAccess here: http://bit.ly/DSEarlyAccessSuccess 

Twitter: 

1.‘Patient engagement driving success in Early Access Programmes’ delves into the importance of #patients having an active voice in conversations with all stakeholders throughout the #EarlyAccess journey. Dr Nicole Gusset tells us her story here:  http://bit.ly/DSEarlyAccessSuccess 

2.Dr Nicole Gusset of SMA Europe believes that experience and determination are the foundations of shaping a powerful #advocate. Find out how Nicole advocates for patient engagement in #EarlyAccess here: http://bit.ly/DSEarlyAccessSuccess 

Facebook, Linkedin, Instagram: 

1.‘Patient group leaders can play a pivotal role within the #EarlyAccess processes, they can ensure the voices and needs of their community are taken into account by industry and help explain the complexities of access to investigational treatments to families who are desperate for treatments’. @Clinigen has created the Patient Advocate Fellowship in early access to build a network of advocates who understand early access and can help each other along the journey. http://bit.ly/DSEarlyAccessFellowship 

2.Are patient communities equally able to be engaged and have a voice when it comes to early access? Holly Lumgair, patient advocacy manager @Clinigen speaks to RARE Revolution Magazine about Clinigen’s innovative fellowship scheme which will support  patient advocates to help improve #EarlyAccess.  http://bit.ly/DSEarlyAccessFellowship 

Twitter: 

1.Patient group leaders can play a pivotal role within #EarlyAccess, they can ensure the voices and needs of their community are taken into account. @Clinigen launched an innovative fellowship scheme which will support #PatientAdvocates along this journey. http://bit.ly/DSEarlyAccessFellowship 

2 Are patient communities equally able to be engaged and have a voice when it comes to early access? Holly Lumgair, patient advocacy manager explains how @Clinigen’s innovative fellowship scheme will support  patient advocates to help improve #EarlyAccess.  http://bit.ly/DSEarlyAccessFellowship 

Facebook, Linkedin, Instagram: 

1. ‘​There is always that balance that needs to be struck between early access and evidence about a treatment. Patients can get caught in the middle.’ Bettina Ryll, Founder of Melanoma Patient Network Europe is just one of the advocacy leaders addressing the subject of patient engagement in #EarlyAccess here: http://bit.ly/DSEarlyAccessEngagement 

2. The patient voice is louder than ever and is being heard. For #EarlyAccess the patient input is key to success.  In this article you can hear the opinions of 4 advocacy leaders in the rare disease space sharing their insights and experience with patient engagement in #EarlyAccess. http://bit.ly/DSEarlyAccessEngagement 

Twitter: ​

1.There is always that balance that needs to be struck between early access and evidence about a treatment. Patients can get caught in the middle.’ Bettina Ryll, Founder of Melanoma Patient Network Europe comments on #EarlyAccess and #Patient Engagement. http://bit.ly/DSEarlyAccessEngagement 

2. For #EarlyAccess the patient voice is key to success.  In this article you can hear the opinions of 4 advocacy leaders in the rare disease space sharing their insights on patient engagement in #EarlyAccess. http://bit.ly/DSEarlyAccessEngagement 

Facebook, Linkedin, Instagram: 

1. ‘​Our interest was in setting up an ethical process for early access that included the children (when appropriate) and families.’ Dr Joe Brierley, consultant intensivist and director of the Great Ormond Street Hospital Paediatric Bioethics Centre, shares his insights into #EarlyAccess within #paediatric #medicine, learn more, http://bit.ly/DSEarlyAccessEthics 

2.​​Dr Joe Brierley, consultant intensivist and director of the Great Ormond Street Hospital Paediatric Bioethics Centre, speaks in his personal capacity about some of the challenges and opportunities that present themselves in #EarlyAccess at one of the world’s leading children’s hospitals.  http://bit.ly/DSEarlyAccessEthics 

Twitter: 

1.‘​Our interest was in setting up an ethical process for early access that included the children (when appropriate) and families.’ Dr Joe Brierley, of the Great Ormond Street Hospital Paediatric Bioethics Centre, shares his insights into #EarlyAccess: http://bit.ly/DSEarlyAccessEthics 

2.Dr Joe Brierley, consultant intensivist and director of the Great Ormond Street Hospital Paediatric Bioethics Centre, talks about the #challenges and #opportunities that present themselves in #EarlyAccess at one of the world’s leading children’s hospitals. http://bit.ly/DSEarlyAccessEthics 

Facebook, Linkedin, Instagram: 

1.“We are still learning about real-world data and the power of it and what it can create.’’  ​Karen Klein, Vice President of Real-World Evidence, @Clinigen has high hopes for the future of #RealWorldData. Here she explores the important role it plays within #EarlyAccess for #RareDisease. http://bit.ly/DSEarlyAccessData 

2. ​Karen Klein, Vice President of Real-World Evidence, @Clinigen is passionate that #data and #EarlyAccessProgrammes provide value for patients, advocates, healthcare professionals and pharmaceutical companies. Karen believes advocacy groups play a key role in the collection of #RealWorldEvidence  http://bit.ly/DSEarlyAccessData 

Twitter:

1.“We are still learning about real-world data and the power of it and what it can create.’’  ​Karen Klein, Vice President of Real-World Evidence, @Clinigen explores the important role #RealWorldEvidence plays within #EarlyAccess for #RareDisease. http://bit.ly/DSEarlyAccessData 

 2. ​Karen Klein, Vice President of Real-World Evidence, @Clinigen is passionate that #data and #EarlyAccess provides value for patients, advocates, healthcare professionals and pharmaceutical companies, find out how here:  http://bit.ly/DSEarlyAccessData 

Newsletter: 

‘‘The challenges in access to treatment can have a serious impact on outcomes and patients’ overall quality of life. The only hope for patients who cannot access treatment via a clinical trial is through early access routes that allow the treating clinician to consider an unlicensed or investigational medicine.’’ Find out what happens when a patient can’t access vital treatments for their rare disease in this article Kieron Lewis, director of strategic consulting @Clinigen tells us about the importance of Early Access Programmes in the rare disease space and how early access routes can offer new therapeutic options to patients.  http://bit.ly/DSEarlyAccessEssentials 

‘Patient engagement driving success in Early Access Programmes’ delves into the importance of patients having an active voice in conversations with all stakeholders throughout the early access journey. Dr Nicole Gusset believes that experience and determination are the foundations of shaping a powerful #advocate and that, ‘We need evidence as the basis for our advocacy tools and arguments, and emotions as our engine.’ Find out how Dr Nicole Gusset of @SMA Europe is advocating for #PatientEngagement in #EarlyAccess http://bit.ly/DSEarlyAccessSuccess 

‘Patient group leaders can play a pivotal role within the #EarlyAccess processes, they can ensure the voices and needs of their community are taken into account by industry and help explain the complexities of access to investigational treatments to families who are desperate for treatments’. Holly Lumgair, patient advocacy manager @Clinigen speaks to RARE Revolution Magazine about the Patient Advocate Fellowship in early access Clinigen’s innovative fellowship scheme which will educate patient advocates to help improve #EarlyAccess and will create a network of advocates who understand early access and can support one another. http://bit.ly/DSEarlyAccessFellowship 

 The patient voice is louder than ever and is being heard. For #EarlyAccess the patient input is key to success.  ‘​There is always that balance that needs to be struck between early access and evidence about a treatment. Patients can get caught in the middle.’ Bettina Ryll, Founder of Melanoma Patient Network Europe is just one of the advocacy leaders addressing the subject of patient engagement in #EarlyAccess here: http://bit.ly/DSEarlyAccessEngagement 

 ‘​Our interest was in setting up an ethical process for early access that included the children (when appropriate) and families.’ Dr Joe Brierley, consultant intensivist and director of the Great Ormond Street Hospital Paediatric Bioethics Centre, shares his insights into #EarlyAccess within #paediatric #medicine and speaks in his personal capacity about some of the challenges and opportunities that present themselves in #EarlyAccess at one of the world’s leading children’s hospitals.  Learn more: http://bit.ly/DSEarlyAccessEthics 

“We are still learning about real-world data and the power of it and what it can create.’’  ​Karen Klein, Vice President of Real-World Evidence, @Clinigen is passionate that #data and #EarlyAccessProgrammes provide value for patients, advocates, healthcare professionals and pharmaceutical companies. Karen has high hopes for the future of #RealWorldData. Here she explores the important role it plays within #EarlyAccess for #RareDisease. http://bit.ly/DSEarlyAccessData