RARE Revolution Magazine

RARE Revolution Magazine The only digital magazine giving a voice to patients affected by rare conditions RARE Revolution Magazine® is published by RARE Revolution Publishing Ltd.

RARE Revolution Magazine® is a FREE, quarterly digital magazine for the Rare disease community and those wishing to learn more and be inspired by their stories. It seeks to give RARE patients and the charities that represent them a voice to be heard on their terms, while providing useful tips, guidance, features and current news. Queries: [email protected]

Editorial/features: [email protected]

Advertising:
[email protected]

: "We may be a zebra in this world but the rare disease community always comes together for each other." In this articl...
12/08/2025

: "We may be a zebra in this world but the rare disease community always comes together for each other."

In this article, Makenzie Vandervort updates us on Josiah’s medical journey to a rare disease diagnosis of familial cold autoinflammatory syndrome ( ).

Today, let's celebrate our amazing community. As we screech into New Year, we're taking a moment to say a big 'thank you' everyone who has openly shared their stories with us this year.

Read the full article at https://bit.ly/3Z1lrWw

✨Welcome to Day Eight of our 24 Days of RARE Inspirations ✨Introducing Tymiak Hawkins, an author, speaker and mental hea...
12/08/2025

✨Welcome to Day Eight of our 24 Days of RARE Inspirations ✨

Introducing Tymiak Hawkins, an author, speaker and mental health advocate. In 2019, he suffered a brainstem stroke that resulted in a cavernous malformation. He has since been diagnosed with Horner syndrome and Wallenberg syndrome.

💬 Here’s what his wife, Rachel, said about Tymiak:

“I am nominating my husband because he embodies strength, resilience, and purpose in the face of unimaginable challenges. In 2019, he suffered a brainstem stroke that resulted in cavernous malformation, Horner syndrome, and Wallenberg syndrome — rare and life-altering conditions that changed his world overnight.

Rather than allowing these diagnoses to define him, he has used his journey to inspire and educate others. Through sharing his story, he brings awareness to rare neurological conditions and reminds others facing similar struggles that they are not alone. His determination to rebuild his life, prioritise his health, and find meaning through adversity is nothing short of extraordinary.

He continues to advocate for self-care, resilience, and the importance of understanding rare conditions — not just for those who live with them, but for the loved ones and communities who support them. His courage and openness make him a true voice for the rare disease community, and that’s why I’m so proud to nominate him.

His strength reminds us that even in life’s rarest battles, resilience is the greatest medicine.”

Follow Tymiak on Instagram at .0

✨Say ‘hello’ to Day Seven of our 24 Days of RARE Inspirations ✨Introducing Lea Jabre, a stiff person syndrome (SPS) advo...
12/07/2025

✨Say ‘hello’ to Day Seven of our 24 Days of RARE Inspirations ✨

Introducing Lea Jabre, a stiff person syndrome (SPS) advocate, who some of you may already know from our previous articles. She was nominated by Lauren McDermott, who also has SPS.

💬 Here’s what Lauren said about Lea:

“Lea and I both have Stiff Person Syndrome. She has been an advocate for SPS by working with nonprofits, writing articles, doing interviews for magazines, creating YouTube videos with another SPS patient and is currently writing a book about her experiences.

Lea is a kind, strong force pushing through immense pain and medical complications to continue to spread awareness and connect with others.”

When asked to describe Lea in three words, Lauren wrote: kind, knowledgeable, and fierce.

You can follow along with Lea’s journey on Instagram: .

✨Welcome to Day Six of our 24 Days of RARE Inspirations ✨Introducing Noah Simonetti, who lives with PPA2 Deficiency. You...
12/06/2025

✨Welcome to Day Six of our 24 Days of RARE Inspirations ✨

Introducing Noah Simonetti, who lives with PPA2 Deficiency. You may have already seen Noah over on RARE Youth Revolution.

💬 Here’s what was said about Noah:

“Noah is only four, but has been through more in his lifetime than most. Despite having a rare disease, PPA2 Deficiency, in which there is no treatment or cure, Noah goes through life with a positive attitude. He loves teaching others to raise awareness and making sure no one ever feels left out.

☀️ Noah’s light shines bright even on the darkest of days. He is the reason we continuously fight for hope, change, and the future.”

Noah was described as smart, empathetic, and curious.

You can continue to follow Noah’s story on Instagram at .

✨ It’s Day Five of our 24 Days of RARE Inspirations ✨Introducing Suvam Bhatta, a rare disease patient advocate and disab...
12/05/2025

✨ It’s Day Five of our 24 Days of RARE Inspirations ✨

Introducing Suvam Bhatta, a rare disease patient advocate and disability rights advocate living with limb-girdle muscular dystrophy (LGMD).

💬 Here’s what was said about Suvam:

“Suvam is a young disability and rare disease advocate from Nepal living with Limb-Girdle Muscular Dystrophy (LGMD), a rare neuromuscular condition. Despite the challenges of living with a progressive disease in a country with limited accessibility and awareness, Suvam has become a powerful voice for inclusion and change.

Through his Instagram page and his active involvement with the Rare Disease Society Nepal (RDSN), he raises awareness about muscular dystrophy, disability rights, rare diseases, accessibility, inclusion, policy change and the impacts of climate change on people with disabilities. His advocacy combines creativity, storytelling, and lived experience to inspire hope and visibility for those often overlooked.

🤝 Suvam is not only a changemaker but also a bridge between science, inclusion, and humanity…Suvam proves that leadership has no physical limits.”

Suvam was described as resilient, visionary, and compassionate.

You can watch Suvam talk about his experiences with the Rare Diseases Society Nepal at youtube.com/watch?v=cqevzuBuAGs

✨ Welcome to Day Four of our 24 Days of RARE Inspirations ✨Introducing Sierra Domb, who lives with three rare conditions...
12/04/2025

✨ Welcome to Day Four of our 24 Days of RARE Inspirations ✨

Introducing Sierra Domb, who lives with three rare conditions: Erythromelalgia (EM), a rare neurovascular pain disorder, Autoimmune Dysregulation, and Visual Snow Syndrome (VSS). She is also the founder of the Visual Snow Initiative, a non-profit organisation.

💬 Here’s what was said about Sierra:

“I am nominating Sierra Domb for her extraordinary advocacy in advancing awareness, research and resources for Visual Snow Syndrome…Prior to her diagnosis, she consulted many physicians, most of whom were unaware of VSS.

Compounded by medical trauma and neglect, her condition deteriorated further, and she developed Post-Traumatic Stress Disorder (PTSD) from years of searching for answers and support with no resources or hope. Instead of letting discouragement take over, Sierra transformed her personal challenges into a mission to provide resources and support to others facing similar experiences.

Sierra's influential advocacy has also been recognised nationally and internationally, including a TEDx Talk, recognition as one of the University of Miami’s ‘30 Under 30’, and a nomination for the 2025 Extraordinary Latinas Award.”

🌎 “Sierra Domb has transformed her personal experience with Visual Snow Syndrome into a global mission—creating resources, funding research, and building a supportive community. She has brought hope to countless individuals while advancing VSS care and awareness worldwide.”

When asked to describe Sierra in three words, among those words were: compassionate, inspiring, and determined.

🔗 Visit Sierra’s website at sierradomb.com. You can follow the Visual Snow Initiative on Instagram at .

Check back tomorrow for Day Five and our next RARE Inspiration!

Step into the world of Vicky, a RARE parent, as she shares an intimate and inspiring insight into raising her daughter, ...
12/04/2025

Step into the world of Vicky, a RARE parent, as she shares an intimate and inspiring insight into raising her daughter, Tiger-Lily, who lives with congenital central hypoventilation syndrome (CCHS). From daily routines and navigating medical challenges to finding immense joy and resilience, Vicky highlights the critical support of her trusted care circle and the life-changing impact of the Keep Me Breathing charity. Read their story of love, determination, and finding their own 'normal'.

https://rarerevolutionmagazine.com/a-day-in-the-life-vicky-mum-to-tiger-lily/

To finish our takeover, we're looking to our creative designer's experience of grief as someone who lives with a .Joe...
12/03/2025

To finish our takeover, we're looking to our creative designer's experience of grief as someone who lives with a .

Joe, who lives with , writes about losing his mum and how he now navigates the needs of his rare disease without the person who fought for his diagnosis over 25 years ago.

Read over on RARE Youth Revolution at https://bit.ly/3U5Hjgj




Next up in our takeover, we're sharing an article by our editor, Nicola Miller. Here, Nicola writes about the uncomfor...
12/03/2025

Next up in our takeover, we're sharing an article by our editor, Nicola Miller.

Here, Nicola writes about the uncomfortable aspects of opening up conversations around and how doing so can help set the journey ahead.

Read at https://bit.ly/4g2qxqO




✨ It’s Day Three of our 24 Days of RARE Inspirations ✨Introducing Oliver Mills, who lives with beta-mannosidosis and lys...
12/03/2025

✨ It’s Day Three of our 24 Days of RARE Inspirations ✨

Introducing Oliver Mills, who lives with beta-mannosidosis and lysosomal Storage Disorder, and was nominated by his mother, Laurel.

💬 Here’s what Laurel had to say about Oliver:

“In 2014, Oliver was diagnosed with Beta-mannosidosis and ultra-rare Lysosomal Storage Disorder (LDS), a progressive disorder that Oliver has been battling his entire life. In the beginning, his symptoms were mild, but this is a taking disorder…

Oliver is progressing more rapidly now. In recent years, beta-mannosidosis has robbed Oliver of his ability to walk, swim and live without daily pain. Despite this, Oliver continues to fight for his life, which he loves dearly. He is a warrior.

🏀 Oliver is full of hope that he will one day he will walk again, play basketball, and maybe fulfill his dream of working for the Los Angeles Lakers. He is the rarest of the rare—a true North Star.”

“...Oliver always says that in life, "You never know!" You never know who will step up to help, or what opportunity is just around the bend. We do know that love ties this journey together.”

When asked to describe Oliver in three words, Laurel wrote: brave, humble, and joyful.

Three families co-founded The Lost Enzyme Project is a non-profit organisation created by families of children diagnosed with Beta-mannosidosis in the United States. They are dedicated to creating a better future for patients with Beta-mannosidosis through patient identification, disease education, research, and treatment development.

🔗 Find out more information about The Lost Enzyme Project at thelostenzymeproject.org. They also have a podcast called ‘These Kids Can’t Wait: Discovering the World of Rare Disease’, which you can listen to now.

Keep up to date with Oliver on Instagram at .

Remember, come back tomorrow for Day Four, as we highlight another RARE Inspiration!

Address

Allen, TX

Website

Alerts

Be the first to know and let us send you an email when RARE Revolution Magazine posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Business

Send a message to RARE Revolution Magazine:

Shortcuts

Share

Category