Diagnosed in 2020, Cushing’s Disease News columnist Noura Costany writes their column, “Chronically Yours,” in hopes of reaching others who, like Noura, had a difficult time finding resources.
Columnists like Noura exemplify what set BioNews apart from others in the digital health industry.
In Noura’s words:
#BioNews #RareDisease #WeAreRare #DigitalHealth
FA Webinar
Do you want to learn more about Friedreich’s Ataxia from patients and caregivers with lived experience?
Do you want to hear about the latest diagnostic processes and treatments for FA?
Do you want answers to questions from a leading FA expert?
If you answered yes to any of these, then register now for the live webinar “Beyond Friedreich's Ataxia Basics,” a virtual roundtable event for FA patients and caregivers! It’s brought to you by Friedreich's Ataxia News and BioNews.
Register here: https://friedreichsataxianews.com/event-registration/
Meet @Betty Vertin.
Betty is a columnist for Muscular Dystrophy News Today and caregiver to three sons, Max, Rowen, and Charlie. Her oldest was diagnosed with Duchenne muscular dystrophy in 2010 at 4 years old. The other boys were diagnosed with the disease the following year.
Betty exemplifies the best of BioNews, where the voice of those diagnosed with rare and chronic diseases and their caregivers matter most.
#BioNews #RareDisease #WeAreRare #DigitalHealth
In Betty’s own words:
SMA News Today columnist and column lead Halsey Blocher
Those diagnosed with rare and chronic diseases have an equally rare and distinctive voice. BioNews amplifies each unique story to bring both meaning and insight into each individual journey.
SMA News Today columnist Halsey Blocher is also a columnist lead. In addition to her own weekly column, Halsey mentors fellow BioNews columnists. This serves to strengthen the culture of inclusivity and empowerment among BioNews employees.
In Halsey's words:
#BioNews #RareDisease #WeAreRare #DigitalHealth #PatientVoice
SMA News Today columnist and column lead, Halsey Blocher
Hemophilia News Today
BioNews is dedicated to providing an inside view into the lived experience of those with rare and chronic conditions. There is nothing more genuine than hearing about the experience of someone living with or caring for someone with a rare or chronic disease.
Hemophilia News Today columnist Jennifer Lynne exemplifies what makes BioNews distinctive in the world of digital health. Her voice has allowed others to find and elevate their own.
In Jennifer’s own words:
“Why does rare disease awareness matter to you?”
Throughout the month of February, BioNews Inc. has proudly shared written contributions from those in rare disease communities along with videos each Friday from our BioNews contributors who answered the question, “Why does rare disease awareness matter to you?”
Through reading each contribution and watching the submitted videos, we have learned so much from those living with rare diseases and the people who love and support them.
Each contribution has reminded us of our “why.” At BioNews, we make a promise to our rare disease communities to deliver trustworthy information to help educate, engage, and champion the patient voice. Our “why” comes from our belief that all those whose lives are affected by rare disease deserve to have quality of life.
Our #whyrare goes beyond just one day in February. More than 60% of our BioNews contributors are living with or are part of the rare disease communities we serve. Rare disease awareness doesn’t end for us today, it is carried with us in everything that we produce as a company. We are happy to share our company-wide video as we answer why rare disease awareness matters to us.
#whyrare
Tyler Campbell (@tcspeaks32) joins @msnewstoday to discuss his MS experience and the powerful documentary, “MS in African Americans” which premiered at #ACTRIMS2023. Full story and video coming soon! #actrimsforum @biogen #abovems #msnews #bionews
Tyler Campbell discusses his MS experience
Tyler Campbell joins BioNews and MS News Today to discuss his MS experience and the powerful documentary, "MS in African Americans" which premiered at #ACTRIMS2023. Full story and video coming soon! #actrimsforum @biogen #abovems #msnews #bionews
We caught up with Can Do Multiple Sclerosis yesterday at the #ACTRIMSForum for an update on the programs and initiatives they've got coming up. COO Kathy Costello gives us the scoop!
#MSnews #BioNews #Actrims2023 #CanDoMS
“Why does rare disease awareness matter to you?”
It’s our final Friday in February and that means we are sharing a video from one of our BioNews contributors for our #whyrare awareness initiative.
This is our last Friday teaser video to share ahead of our company-wide video project, which will debut on Rare Disease Day, Feb. 28.
Scott Chernin, a client success manager at BioNews, strongly believes in our mission to provide a unified and distinctive space to engage, educate, and empower those affected by rare diseases to help improve patient health and quality of life. Our mission is very real for all who work at BioNews as more than 60% of our contributors are living with or are caregivers for someone living with a rare disease.
Scott’s message is a strong example of the relationships built within this company and how, for everyone who works here, it is so much more than a job.
Scott’s #whyrare:
"Rare Disease Day means advocating for my fellow employees who are afflicted with a rare disease. They're the reason why I come to work; I like to see their stories being told, and it just makes this job so much more meaningful and valuable to me. So that is what rare disease day means to me — advocating for my fellow employees."
#whyrare #bionews #wearerare #rarediseaseday2023 #rarediseases #digitalhealth
“Why does rare disease awareness matter to you?”
It’s our final Friday in February and that means we are sharing a video from one of our BioNews contributors for our #whyrare awareness initiative.
This is our last Friday teaser video to share ahead of our company-wide video project, which will debut on Rare Disease Day, Feb. 28.
Scott Chernin, a client success manager at BioNews, strongly believes in our mission to provide a unified and distinctive space to engage, educate, and empower those affected by rare diseases to help improve patient health and quality of life. Our mission is very real for all who work at BioNews as more than 60% of our contributors are living with or are caregivers for someone living with a rare disease.
Scott’s message is a strong example of the relationships built within this company and how, for everyone who works here, it is so much more than a job.
Scott’s #whyrare:
"Rare Disease Day means advocating for my fellow employees who are afflicted with a rare disease. They're the reason why I come to work; I like to see their stories being told, and it just makes this job so much more meaningful and valuable to me. So that is what rare disease day means to me — advocating for my fellow employees."
#whyrare #bionews #wearerare #rarediseaseday2023 #rarediseases #digitalhealth
“Why does rare disease awareness matter to you?”
On this Saturday, we are sharing a video from one of our BioNews Inc. contributors for our #whyrare awareness initiative.
These videos are serving as a teaser for our company-wide video project that we will share on Rare Disease Day, Feb. 28.
Today, Jamie Askari, a caregiver columnist for Parkinson’s News Today shares her #whyrare and highlights the importance of education and awareness as essential tools for change.
"Rare disease awareness is important to me because I feel it is vital to educate the world about diseases like Parkinson's. Education and awareness are essential tools that will help change the stigma around rare diseases. I would love to live in a world where individuals with rare diseases are always treated equally and kindly."
#whyrare #bionews #wearerare #rarediseaseday2023 #rarediseases #digitalhealth #caregiver #advocate #education #awareness #kindness
“Why does rare disease awareness matter to you?”
On this Saturday, we are sharing a video from one of our BioNews Inc. contributors for our #whyrare awareness initiative.
These videos are serving as a teaser for our company-wide video project that we will share on Rare Disease Day, Feb. 28.
Today, Jamie Askari, a caregiver columnist for Parkinson’s News shares her #whyrare and highlights the importance of education and awareness as essential tools for change.
"Rare disease awareness is important to me because I feel it is vital to educate the world about diseases like Parkinson's. Education and awareness are essential tools that will help change the stigma around rare diseases. I would love to live in a world where individuals with rare diseases are always treated equally and kindly."
#whyrare #bionews #wearerare #rarediseaseday2023 #rarediseases #digitalhealth #caregiver #advocate #education #awareness #kindness
“Why does rare disease awareness matter to you?”
It’s the second Friday in February and that means we are sharing a video from one of our BioNews Inc. contributors for our #whyrare awareness initiative. Every Friday this month, these videos are serving as a teaser for our company-wide video project that we will share on Rare Disease Day, Feb. 28.
Richard Poulin III is a columnist for AADC News and writes from a caregiver perspective. Richard has a child with aromatic l-amino decarboxylase (AADC) deficiency. Today, he shares a powerful message of the importance of hope for those in the rare disease communities. His story inspires others to find the joy and make meaningful memories.
Richard shares:
"What makes us rare is that we are a family that never gives up hope. We continue on the journey of making memories together. Even when the path on that journey is not clear or the future is uncertain, we continue to make our way together."
#whyrare #bionews #wearerare #rarediseaseday2023 #rarediseases #digitalhealth #aadcdeficiency #hope #joy #makememories
“Why does rare disease awareness matter to you?”
It’s the second Friday in February and that means we are sharing a video from one of our BioNews Inc. contributors for our #whyrare awareness initiative. Every Friday this month, these videos are serving as a teaser for our company-wide video project that we will share on Rare Disease Day, Feb. 28.
Richard Earl Poulin III is a columnist for AADC News and writes from a caregiver perspective. Richard has a child with aromatic l-amino decarboxylase (AADC) deficiency. Today, he shares a powerful message of the importance of hope for those in the rare disease communities. His story inspires others to find the joy and make meaningful memories.
Richard shares:
"What makes us rare is that we are a family that never gives up hope. We continue on the journey of making memories together. Even when the path on that journey is not clear or the future is uncertain, we continue to make our way together."
#whyrare #bionews #wearerare #rarediseaseday2023 #rarediseases #digitalhealth #aadcdeficiency #hope #joy #makememories
“Why does rare disease awareness matter to you?”
As part of BioNews Inc’s #whyrare awareness initiative, every Friday in February we will be sharing a video from one of our contributors.
The first video we are highlighting is from our HR People and Culture Manager Brittany Foster. Brittany is also a rare disease patient living with pulmonary hypertension and congenital heart disease.
Brittany shares her #whyrare:
"I raise awareness because during my diagnosis journey, a diagnosis was a little bit delayed. Because of this, I have a limited number of years left in my life. My hope is that in the future, children that come after me have the chance to have both quantity — years in their life — as well as a really good quality of life."
#wearerare #bionews #whyrare #rarediseaseday2023 #rarediseases #digitalhealth #pulmonaryhypertension #lungdisease #heartdisease #congenitalheartdisease #diagnosis
