Michal Rutkowski, Director, Regional Patient Advocate Program
HAEi Regional Patient Advocates – We help HAE people navigate the future!
“Alone, we can do so little; together, we can do so much.”
The above quote of the late and great Helen Keller, a world-famous speaker, author, and advocate for people with disabilities, refers to humans’ capability to achieve goals above and beyond their inventiveness if only we work together. Despite the passage of time, this quote remains relevant and even more significant nowadays.
It should never be forgotten that “Patients with a deficiency of C1 inhibitor are not just interesting models for study, however; they are critically ill. Many have ancestors who died suddenly from asphyxia… Patients live in constant dread of life-threatening laryngeal obstruction.” These characteristics of people with HAE, written by the pioneers of HAE, Prof. Agostini and Prof. Cicardi, rightly describe the disease and its burden that has accompanied patients through generations.
When HAEi was established in 2004, a promise was made to patients. Since then, HAEi has been fulfilling this promise to help everyone with HAE access and get reimbursement for modern treatment options. And it was back then when the world’s HAE community first united to work together.
After 20 years of tireless work, 750 healthcare professionals, patient leaders, and industry representatives from 90 countries met for the 2024 HAEi Global Leadership Workshop and ACARE Global Angioedema Forum 2024. The largest-ever gathering to advance angioedema science, clinical care, and patient advocacy was the culmination of over two decades of efforts and activities to benefit people with HAE.
I am delighted that at the center of the GLW were HAEi Regional Patient Advocates (RPA), whose contribution played a fundamental role in the meeting’s ultimate success. Regardless of the region the RPA covers or the language the RPA speaks, they serve HAEi Member Organizations (MO) and HAE patients with complete transparency, mutual understanding, and respect. Indeed, they are HAEi’s backbone and HAEi’s feet on the ground in the regions. To have this opportunity to collaborate with HAEi RPAs makes me proud of humanity in the 21st century as they are an example of how strong, compassionate, and humble personalities, modern technologies, and advanced science can be used to help and unite people.
The RPAs were instrumental in delivering the breakout sessions at the GLW. You can read more about what went on in each session in the summaries of the RPA work. I’m also delighted to welcome our newest RPA, Fanny Schappler, who tells us more about herself in her first RPA report. Please take a moment to check all the summaries; there will be lots to capture your interest. If you are a newcomer, not yet connected with HAE peers, please contact one of our Regional Patient Advocates, who would be happy to assist you.
I would like to end by quoting one of the greatest minds of the 20th century, Stephen Hawkins:
“We are very, very small, but we are profoundly capable of very, very big things.”
Given Prof. Hawkins’ scope of interest, the first part of the quote most likely refers to what a small part of the cosmos we are, but surely the next part indicates that humanity can achieve big things, and so can HAEi RPAs (in the right proportions, so to speak 😀).
Stay tuned!
Michal Rutkowski
Director, Regional Patient Advocate Program
Michal Rutkowski, Director, Regional Patient Advocate Program
HAEi Regional Patient Advocates – We help HAE people navigate the future!
“Alone, we can do so little; together, we can do so much.”
The above quote of the late and great Helen Keller, a world-famous speaker, author, and advocate for people with disabilities, refers to humans’ capability to achieve goals above and beyond their inventiveness if only we work together. Despite the passage of time, this quote remains relevant and even more significant nowadays.
It should never be forgotten that “Patients with a deficiency of C1 inhibitor are not just interesting models for study, however; they are critically ill. Many have ancestors who died suddenly from asphyxia… Patients live in constant dread of life-threatening laryngeal obstruction.” These characteristics of people with HAE, written by the pioneers of HAE, Prof. Agostini and Prof. Cicardi, rightly describe the disease and its burden that has accompanied patients through generations.
When HAEi was established in 2004, a promise was made to patients. Since then, HAEi has been fulfilling this promise to help everyone with HAE access and get reimbursement for modern treatment options. And it was back then when the world’s HAE community first united to work together.
After 20 years of tireless work, 750 healthcare professionals, patient leaders, and industry representatives from 90 countries met for the 2024 HAEi Global Leadership Workshop and ACARE Global Angioedema Forum 2024. The largest-ever gathering to advance angioedema science, clinical care, and patient advocacy was the culmination of over two decades of efforts and activities to benefit people with HAE.
I am delighted that at the center of the GLW were HAEi Regional Patient Advocates (RPA), whose contribution played a fundamental role in the meeting’s ultimate success. Regardless of the region the RPA covers or the language the RPA speaks, they serve HAEi Member Organizations (MO) and HAE patients with complete transparency, mutual understanding, and respect. Indeed, they are HAEi’s backbone and HAEi’s feet on the ground in the regions. To have this opportunity to collaborate with HAEi RPAs makes me proud of humanity in the 21st century as they are an example of how strong, compassionate, and humble personalities, modern technologies, and advanced science can be used to help and unite people.
The RPAs were instrumental in delivering the breakout sessions at the GLW. You can read more about what went on in each session in the summaries of the RPA work. I’m also delighted to welcome our newest RPA, Fanny Schappler, who tells us more about herself in her first RPA report. Please take a moment to check all the summaries; there will be lots to capture your interest. If you are a newcomer, not yet connected with HAE peers, please contact one of our Regional Patient Advocates, who would be happy to assist you.
I would like to end by quoting one of the greatest minds of the 20th century, Stephen Hawkins:
“We are very, very small, but we are profoundly capable of very, very big things.”
Given Prof. Hawkins’ scope of interest, the first part of the quote most likely refers to what a small part of the cosmos we are, but surely the next part indicates that humanity can achieve big things, and so can HAEi RPAs (in the right proportions, so to speak 😀).
Stay tuned!
Michal Rutkowski
Director, Regional Patient Advocate Program