Bionews

11/01/2024

Bionews and Friedreich's Ataxia Newsvare proud to present "Stronger Together" – a Patient and Caregiver Collaboration Webinar.

Don’t miss this one-of-a-kind opportunity! Register today!

👉 https://friedreichsataxianews.com/event-registration/?utm_source=linkedin&utm_medium=organic&utm_campaign=linkedinreg

Join host and patient advocate, Sean Baumstark and panelists Kyle Bryant, Kiersten Riggs , Norm Simpson and Victoria Arend Carbone as they evoke meaningful conversations and share their experience on living with FA.

When: Wednesday November 6th 6 p.m. ET/3 p.m. PT

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Register today for our Friedreich's Ataxia Live Webinar featuring a panel of patients and experts. Stronger Together: Patient and Caregiver Collaboration in FA.

08/20/2024

Imagine facing a rare disease that changes everything. Through Matthew Lafleur's eyes, we are invited into the deeply personal journey of living with . Matt courageously shares his life story, from the uncertainty before his diagnosis to the daily battles he faces. His inspiring story is at the heart of our new immersive experience, "The Rare Journey."

Through animation, video, and interactive elements, you’ll feel what it’s like to walk in Matt’s shoes, gaining a deeper understanding of the patient experience.

Join Bionews, Inc. as we launch this innovative platform, offering a unique perspective on the patient experience. Let’s come together to support Matt and individuals facing rare diseases, fostering a more understanding and compassionate world.

Check out: https://friedreichsataxianews.com/experience/matts-rare-journey

Diagnosed at 9 years old, Matt Lafleur & family faced the devastating reality of Friedreich's ataxia. His journey is a testament to courage, hope, & advocacy for the FA community.

08/13/2024

You read that right! Todd Vogt, diagnosed with early-onset Parkinson's at 43, is showing the world what's possible. Proving that doesn't define you, Todd's rowing his way to the Paralympics!

Want to hear his inspiring story? We've got you covered. This news (and many others!) comes from ParkinsonsNewsToday.com, one of Bionews' many brands dedicated to informing and connecting rare disease communities.

Read the full story and get your daily dose of Parkinson's news! ➡️ https://parkinsonsnewstoday.com/news/man-early-onset-parkinsons-rowing-us-paralympics/

P.S. We're cheering you on, Todd! 💪

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07/23/2024

Recognizing a parent's true love and commitment becomes profound when navigating life with a rare disease.

In his latest column, Friedreich's Ataxia News columnist and BioNews' Director of Business Development, Matthew Lafleur writes an open letter to his parents, thanking them for their unwavering support, endless sacrifices, and tireless advocacy.

In Matt’s words, “The burden you carry is heavy. I imagine that, at times, guilt weighs heavily on your heart. Regardless of whether or not you knew about the mutated FXN gene that causes FA, you certainly wouldn’t have chosen to pass the disease on to your children. Just as you wouldn’t blame us for our condition, you’re not at fault for being our parent, either.”

Read the full column https://friedreichsataxianews.com/columns/open-letter-parents-whose-children-have-fa/

Friedreich's Ataxia News is a website, one of 50 Bionews condition specific sites, that provides up-to-date news, scientific articles, and personal stories for individuals diagnosed with FA and their caregivers. It offers a platform to connect with others who understand the challenges of this condition.

Columnist Matt Lafleur pens an open letter to unsung heroes in the FA community who often suffer in silence: parents.

07/10/2024

Bionews evolves with a bold new look!

We’re thrilled to share our brand refresh, and our unwavering dedication to YOU – the rare disease community and the partners who champion their voices – stands stronger than ever.

Head over to our website (bionews.com) to explore the fresh look and see how Bionews, Inc. continues to be the leading source of information and connection for rare disease patients and advocates.

Stay tuned for exciting updates, actionable patient insights you can use, and engaging resources specifically designed to support the rare disease community. 🚀💪💪🏽💪🏾

06/04/2024

Say Hello to the New Bionews! Same Powerful Voice for Rare Diseases.

We've updated our logo, colors, and website to create a more modern and engaging experience for our rare and chronic disease communities. But our commitment to providing trusted information and empowering patients remains unchanged!

Check out our fresh look and the same trusted source of rare disease information: https://bionews.com/

05/15/2024

Living with a rare disease can significantly impact mental health. Stress, uncertainty, and isolation, often associated with rare diseases, can take a toll on emotional well-being.

In honor of Mental Health Awareness Month in May, Pulmonary Fibrosis News columnist Samuel Kirton shares his experience with depression, anxiety, and a lesser-known mental health challenge, survivor’s guilt.

In his recent column, Kirton shares more about survivor’s guilt: “Another form of depression, which I’ve often seen in the IPF community following a lung transplant, is referred to as survivor’s guilt. When I received my bilateral lung transplant in July 2021, I immediately realized that receiving the lungs that saved my life meant another person had died.”

Read more here https://pulmonaryfibrosisnews.com/columns/recognizing-managing-depression-life-rare-disease/

Pulmonary Fibrosis News, a BioNews website, shares patient perspectives on living with pulmonary fibrosis.

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It's not uncommon for those with a rare disease to experience depression, columnist Sam Kirton writes. But know there are resources available.

04/26/2024

Patient advocacy groups like the Friedreich's Ataxia Research Alliance (FARA) play a critical role in elevating the profile of rare diseases like Friedreich’s ataxia, or FA.

Members of these groups provide unique insight into living with a rare disease, and in engaging research organizations (CROs) and biopharmaceutical companies in meaningful dialogue.

Matthew Lafleur, Associate Director of Patient Engagement at BioNews, who is living with FA, says: “You can’t talk about the progress of the Friedreich’s ataxia community without mentioning FARA. Its steadfast support to the FA community makes it a model for other rare disease nonprofits to look to, and FARA is the reason I became involved in patient advocacy.”

FARA champions the FA community with a focus on both clinical management and the treatment pipeline. Learn more about FARA and their upcoming FA Research Reception on April 27th: https://friedreichsataxianews.com/news/fara-host-april-27-meeting-disease-research-management

Friedreich's Ataxia News, a BioNews website, shares news, resources, and patient perspectives on living with FA.

The Friedreich's Ataxia Research Alliance will educate patients and caregivers on the latest in disease research and management April 27.

04/18/2024

Beyond "stay positive": Why toxic positivity can miss the mark for rare disease patients.

Living with a rare disease is a constant journey with ups and downs. While positivity is important, dismissing the challenges and pain patients experience can be isolating. Hemophilia B and Von Willebrand's disease patient Jennifer Lynne shares a powerful perspective on "toxic positivity" and how it can create unrealistic expectations.

"I'm realizing that striving for positivity in every situation can create unrealistic expectations of how life should be. Life is full of ups and downs, and it's normal to experience a range of emotions in response to different situations." - Jennifer Lynne (DX Hemophilia B and Von Von Willebrand's disease)

Read more here https://hemophilianewstoday.com/columns/me-toxic-how-im-learning-rein-in-too-much-positivity/

Hemophilia News Today, a BioNews website, shares patient perspectives on living with Hemophilia.

Columnist Jennifer Lynne is learning to seek more balance when she's inclined to share too much positivity, to the point of toxicity.

04/02/2024

In the pursuit of new treatments for rare diseases, patients and their families often become experts through firsthand experience. Learn how organizations are collaborating with patients to advance research and drug development.

BBioNews and our connections with rare disease communities, can help.

Read more here: https://www.biospace.com/article/turning-to-patients-to-help-drive-rare-disease-drug-development/

Patient advocacy groups aided in the development of the very first marketed drugs for certain rare diseases, including progeria and Friedreich’s ataxia.

03/29/2024

A diagnosis anniversary of a rare disease can be a poignant moment of reflection, evoking a myriad of feelings and emotions. As he honors his eighth year since his diagnosis, Pulmonary Hypertension News columnist Mike Naple thoughtfully takes stock of the years since his diagnosis and anticipates what the future holds.

Read more about Mike's reflections at https://pulmonaryhypertensionnews.com/columns/my-pulmonary-hypertension-diagnosis-takes-another-trip-around-sun/

Pulmonary Hypertension News is part of the BioNews family of leading rare disease websites serving their communities with comprehensive and up-to-date news, resources, and patient perspectives.

Eight years after his pulmonary hypertension diagnosis, columnist Mike Naple reflects on how far he's come since his 2016 hospitalization.