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Special edition 011

Biocryst Rare Disease Day edition – Hereditary Angioedema HAE

Biocryst Rare Disease Day edition - Hereditary Angioedema HAE

We are so pleased to bring you our Rare Disease Day 2023 Special Edition! The topic is HereditaryAngioedema and is a celebration of just some of the amazing advocates and patients and professionals working in the HAE space.
We would like to thank @BioCryst who have partnered with us on this very special project. We would also like to thank all the contributors who so generously gave their time and insight to raise the profile of rare disease and share their RARE journey.https://bit.ly/RDD2023-HAE #HAE #HereditaryAngioedema #RareDisease #RareDiseaseDay #RDD2023 #shareyourcolours———————————————————Our #RareDiseaseDay 2023 Special Edition on #HereditaryAngioedema is here. It’s a celebration of  the amazing advocates, patients and professionals working and living with #HAE. Thanks to our contributors and  @BioCryst for partnering on this special project.https://bit.ly/RDD2023-HAE———————————————————We are so pleased to bring you our Rare Disease Day 2023 Special Edition! The topic is HereditaryAngioedema and is a celebration of just some of the amazing advocates and patients and professionals working in the HAE space. We would like to thank BioCryst who have partnered with us on this very special project. We would also like to thank all the contributors who so generously gave their time and insight to raise the profile of rare disease and share their RARE journey.(link embedded in to image)https://bit.ly/RDD2023-HAE
Dana Shapiro learned she had hereditary angioedema (HAE) in 2003. The condition has often challenged her, but it has also given her an incredible zest for living her best life, especially now she has access to life-transforming medical care. Looking to start a family, Dana faced an ethical decision as to whether she should have pre-implantation genetic diagnosis (PGD) to ensure her child did not have the same condition#HAE #HereditaryAngioedema #RareDisease #RareDiseaseDay #RDD2023https://bit.ly/FacingTheFutureWithOptimism———————————————————Dana Shapiro learned she had #HereditaryAngioedema (#HAE) in 2003 which has often challenged her, but Dana faced an ethical decision as to whether she should have pre-implantation genetic diagnosis (PGD) to ensure her child did not have the same conditionhttps://bit.ly/FacingTheFutureWithOptimism———————————————————Dana Shapiro learned she had hereditary angioedema (HAE) in 2003. The condition has often challenged her, but it has also given her an incredible zest for living her best life, especially now she has access to life-transforming medical care. Looking to start a family, Dana faced an ethical decision as to whether she should have pre-implantation genetic diagnosis (PGD) to ensure her child did not have the same conditionhttps://bit.ly/FacingTheFutureWithOptimism
Despite experiencing struggles growing up with hereditary angioedema (HAE), it was important to Nicola “Nicky” Bowen that, when she had her own children, she would instil in them a positive mindset about the condition and normalise it as much as possible, especially for her daughter, Rhiannon, who was also diagnosed with HAE. Nicky and Rhiannon talk to RARE Revolution about their optimistic outlook on life and their condition, and their determination not to let their diagnosis stop them.#HAE #HereditaryAngioedema #RareDisease #RareDiseaseDay #RDD2023 https://bit.ly/InstillingAPositiveMindset———————————————————It was important to Nicola “Nicky” Bowen that, when she had her own children, she would instil in them a positive mindset about living with #HAE and normalise it as much as possible, especially for her daughter, Rhiannon, who was also diagnosed with HAE. https://bit.ly/InstillingAPositiveMindset———————————————————Despite experiencing struggles growing up with hereditary angioedema (HAE), it was important to Nicola “Nicky” Bowen that, when she had her own children, she would instil in them a positive mindset about the condition and normalise it as much as possible, especially for her daughter, Rhiannon, who was also diagnosed with HAE. Nicky and Rhiannon talk to RARE Revolution about their optimistic outlook on life and their condition, and their determination not to let their diagnosis stop them.  https://bit.ly/InstillingAPositiveMindset
When Furkhanda Haxton received a diagnosis of hereditary angioedema (HAE) in 1988, understanding of the condition was limited and treatment options were few. The diagnosis has had a profound effect on Furkhanda’s life but, as understanding about the disease has evolved and treatment options have improved, she has turned her experience into a positive by empowering other people with HAE to strive to live their best lives.https://bit.ly/BecomeThePatientExpert
#HAE #HereditaryAngioedema #RareDisease #RareDiseaseDay #RDD2023———————————————————When Furkhanda Haxton received a diagnosis of #HereditaryAngioedema (#HAE) in 1988, understanding of the condition  treatment options were limited. Since then knowledge has evolved soshe uses her experience to  empower people with HAE to live their best lives.https://bit.ly/BecomeThePatientExpert
———————————————————When Furkhanda Haxton received a diagnosis of hereditary angioedema (HAE) in 1988, understanding of the condition was limited and treatment options were few. The diagnosis has had a profound effect on Furkhanda’s life but, as understanding about the disease has evolved and treatment options have improved, she has turned her experience into a positive by empowering other people with HAE to strive to live their best liveshttps://bit.ly/BecomeThePatientExpert
Kathrin Schön was diagnosed with hereditary angioedema (HAE) at 14. Now a doctor living in Frankfurt, Germany, she recognises her role in providing the best care for her patients through being a voice for her community, and endeavours to not let her diagnosis be a barrier to living life to the fullesthttps://bit.ly/FromHAEToDoctor#HAE #HereditaryAngioedema #RareDisease #RareDiseaseDay #RDD2023———————————————————Kathrin Schön was diagnosed with #HereditaryAngioedema (#HAE) at age 14. Now a doctor living in Frankfurt, Germany, she recognises her role in providing the best care for her patients through being a voice for her community.https://bit.ly/FromHAEToDoctor#RareDiseaseDay #RDD2023———————————————————Kathrin Schön was diagnosed with hereditary angioedema (HAE) at 14. Now a doctor living in Frankfurt, Germany, she recognises her role in providing the best care for her patients through being a voice for her community, and endeavours to not let her diagnosis be a barrier to living life to the fullest.https://bit.ly/FromHAEToDoctor
Dr Shuayb Elkhalifa is a consultant immunologist and allergist. He sees the UK’s early access to medicine scheme (EAMS) as a vital pathway for delivering innovative and life-changing treatment to people with rare diseases such as hereditary angioedema (HAE), in which there is considerable unmet need.https://bit.ly/RDD23-EAMS#HAE #HereditaryAngioedema #RareDisease #RareDiseaseDay #RDD2023———————————————————
Dr Shuayb Elkhalifa sees the UK’s early access to medicine scheme (EAMS) as a vital pathway for delivering innovative and life-changing treatment to people with rare diseases such as #HereditaryAngioedema (#HAE), where there is considerable unmet needhttps://bit.ly/RDD23-EAMS———————————————————
Dr Shuayb Elkhalifa is a consultant immunologist and allergist. He sees the UK’s early access to medicine scheme (EAMS) as a vital pathway for delivering innovative and life-changing treatment to people with rare diseases such as hereditary angioedema (HAE), in which there is considerable unmet need.https://bit.ly/RDD23-EAMS
Dr Patrick Yong is a consultant immunologist at Frimley Health NHS Foundation Trust, Surrey. He presents a detailed overview of hereditary angioedema (HAE); the symptoms, inheritance, diagnosis and treatment options, and provides his insights as to the greatest disease burdens of this rare conditionhttps://bit.ly/WhatIsHAE#HAE #HereditaryAngioedema #RareDisease #RareDiseaseDay #RDD2023———————————————————Dr Patrick Yong is a consultant immunologist. He presents a detailed overview of #HereditaryAngioedema (#HAE); the symptoms, inheritance, diagnosis and treatment options, and provides his insights as to the greatest disease burdens of this rare conditionhttps://bit.ly/WhatIsHAE———————————————————
Dr Patrick Yong is a consultant immunologist at Frimley Health NHS Foundation Trust, Surrey. He presents a detailed overview of hereditary angioedema (HAE); the symptoms, inheritance, diagnosis and treatment options, and provides his insights as to the greatest disease burdens of this rare condition.https://bit.ly/WhatIsHAE
Christine Symons is an immunology nurse at University Hospitals Plymouth NHS Trust. As the department has grown with her during her 27 years of service, she has been able to develop her expertise in the hereditary angioedema (HAE) field, moving from nurse specialist to nurse consultant. Christine shares her experiences of caring for her HAE patients, and what life can look like for a person living with this diseasehttps://bit.ly/HolisticPatientNeeds#HAE #HereditaryAngioedema #RareDisease #RareDiseaseDay #RDD2023———————————————————During her 27 years of service Christine Symons has been able to develop her expertise in the #HereditaryAngioedema (#HAE) field. She shares her experiences of caring for her patients, and what life can look like for a person living with this disease.https://bit.ly/HolisticPatientNeeds———————————————————Christine Symons is an immunology nurse at University Hospitals Plymouth NHS Trust. As the department has grown with her during her 27 years of service, she has been able to develop her expertise in the hereditary angioedema (HAE) field, moving from nurse specialist to nurse consultant. Christine shares her experiences of caring for her HAE patients, and what life can look like for a person living with this disease.https://bit.ly/HolisticPatientNeeds
Dr Lavanya Diwakar is a consultant clinical immunologist at University Hospitals of North Midlands NHS Trust. She discusses the methods by which quality of life (QoL) are currently measured for patients with a rare disease and how this relates to the availability of new treatments.https://bit.ly/CostVsValueRareDisease#HAE #HereditaryAngioedema #RareDisease #RareDiseaseDay #RDD2023———————————————————Dr Lavanya Diwakar is a consultant clinical immunologist. She discusses the methods by which quality of life (QoL) are currently measured for patients with a #RareDisease and how this relates to the availability of new treatments. https://bit.ly/CostVsValueRareDisease#HAE #HereditaryAngioedema———————————————————
Dr Lavanya Diwakar is a consultant clinical immunologist at University Hospitals of North Midlands NHS Trust. She discusses the methods by which quality of life (QoL) are currently measured for patients with a rare disease and how this relates to the availability of new treatments.https://bit.ly/CostVsValueRareDisease
HAE UK’s objectives include raising awareness of HAE, educating about medicines for HAE, ensuring best practice in relationships between patients and healthcare professionals, and sharing information about new treatments. Angela Metcalfe, CEO of HAE UK, explains how that works in practice. Louise Fish, CEO of Genetic Alliance UK, gives her thoughts about what best practice looks like when pharmaceutical companies collaborate with patient advocacy groupshttps://bit.ly/RDD23-HAEUK#HAE #HereditaryAngioedema #RareDisease #RareDiseaseDay #RDD2023———————————————————Angela Metcalfe, CEO, explains @HAE_UK’s objectives and how that works in practice and Louise Fish, CEO of @GeneticAll_UK discusses best practice when pharma collaborate with patient advocacy groupshttps://bit.ly/RDD23-HAEUK#HAE #HereditaryAngioedema———————————————————HAE UK’s objectives include raising awareness of HAE, educating about medicines for HAE, ensuring best practice in relationships between patients and healthcare professionals, and sharing information about new treatments. Angela Metcalfe, CEO of HAE UK, explains how that works in practice. Louise Fish, CEO of Genetic Alliance UK, gives her thoughts about what best practice looks like when pharmaceutical companies collaborate with patient advocacy groups.https://bit.ly/RDD23-HAEUK
George Stanley, medical director, and Gemma Gapper, associate director of policy and patient access, UK and Ireland, BioCryst Pharmaceuticals, Inc, discuss their commitment to a patient-centric approach to drug development and explain why the company’s focus is on rare disease.https://bit.ly/BiocrystPatientCentric#HAE #HereditaryAngioedema #RareDisease #RareDiseaseDay #RDD2023———————————————————
George Stanley, medical director, and Gemma Gapper, associate director of policy and patient access, UK and Ireland, @BioCrystPharma, discuss their commitment to a patient-centric approach to drug development and explain why they focus is on #RareDisease.https://bit.ly/BiocrystPatientCentric———————————————————George Stanley, medical director, and Gemma Gapper, associate director of policy and patient access, UK and Ireland, BioCryst Pharmaceuticals, Inc, discuss their commitment to a patient-centric approach to drug development and explain why the company’s focus is on rare disease.https://bit.ly/BiocrystPatientCentric
Abid Karim, senior vice president and general manager, Europe, and Luke Robinson, general manager, UK, Ireland & Nordics, BioCryst Pharmaceuticals, Inc, discuss BioCryst’s motivation for focusing on rare disease research and development—serving the rare disease community, and how its support of rare disease patients and healthcare professionals goes beyond drug development.https://bit.ly/AcceleratingOurPathForward#HAE #HereditaryAngioedema #RareDisease #RareDiseaseDay #RDD2023———————————————————Abid Karim and Luke Robinson from @BioCrystPharma, discuss BioCryst’s motivation for focusing on #RareDiseaseResearch and development- serving the rare disease community, and how its support of #RareDisease #Patients and HCP’s goes beyond drug developmenthttps://bit.ly/AcceleratingOurPathForward———————————————————Abid Karim, senior vice president and general manager, Europe, and Luke Robinson, general manager, UK, Ireland & Nordics, BioCryst Pharmaceuticals, Inc, discuss BioCryst’s motivation for focusing on rare disease research and development—serving the rare disease community, and how its support of rare disease patients and healthcare professionals goes beyond drug development.https://bit.ly/AcceleratingOurPathForward
We would like to thank @BioCryst who have partnered with us on this very special project. We would also like to thank all the contributors who so generously gave their time and insight to raise the profile of rare disease and share their RARE journey. Our Rare Disease Day 2023 Special Edition on HereditaryAngioedema is a celebration of just some of the amazing advocates and patients and professionals working in the HAE space.You can view the full edition herehttps://bit.ly/RDD2023-HAE
 #HAE #HereditaryAngioedema #RareDisease #RareDiseaseDay #RDD2023 #shareyourcolours———————————————————Our #RareDiseaseDay 2023 Special Edition on #HereditaryAngioedema is here. It’s a celebration of  the amazing advocates, patients and professionals working and living with #HAE. Thanks to our contributors and  @BioCryst for partnering on this special project.https://bit.ly/RDD2023-HAE
———————————————————We would like to thank @BioCryst who have partnered with us on this very special project. We would also like to thank all the contributors who so generously gave their time and insight to raise the profile of rare disease and share their RARE journey. Our Rare Disease Day 2023 Special Edition on HereditaryAngioedema is a celebration of just some of the amazing advocates and patients and professionals working in the HAE space.https://bit.ly/RDD2023-HAE

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