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 NRG Collective.

RARE Revolution 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:
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We are delighted to launch our Spring 2025 edition - RARE Siblings funded by Alexion Pharmaceuticals This edition is giv...
04/26/2025

We are delighted to launch our Spring 2025 edition - RARE Siblings funded by Alexion Pharmaceuticals This edition is given over to the voices that are seldom heard—the voices of our rare and super siblings. Within, you will find candid stories from siblings of all ages and backgrounds, detailing the lived experiences and the breadth of impact of siblings. This includes the emotional impact, along with significant practical
implications of being part of a rare disease family.

Read the full edition here: https://bit.ly/RARE-Siblings

NephCure, a leading nonprofit organization dedicated to finding better treatments and a cure for rare kidney diseases, i...
04/25/2025

NephCure, a leading nonprofit organization dedicated to finding better treatments and a cure for rare kidney diseases, is proud to announce the second annual APOL1 Kidney Disease Awareness Day, taking place on April 29, 2025. This day is dedicated to raising national awareness of APOL1 kidney disease, which is a genetic form of kidney disease that disproportionately affects people of African ancestry.

https://rarerevolutionmagazine.com/nephcure-celebrates-second-annual-apol1-kidney-disease-awareness-day-on-april-29-2025/

🌟 Exciting News! 🌟Join CureDuchenne at the FUTURES National Conference hosted by CureDuchenne from May 22-25 in San Anto...
04/25/2025

🌟 Exciting News! 🌟

Join CureDuchenne at the FUTURES National Conference hosted by CureDuchenne from May 22-25 in San Antonio, TX! This four-day event will bring together leading experts, inspirational speakers, and the latest insights on care and treatment for Duchenne and Becker muscular dystrophy. 🌍✨

Don't miss out on this opportunity to connect, learn, and thrive together. Register now and be part of a community that uplifts every family touched by Duchenne. 💪❤️

More info: https://rarerevolutionmagazine.com/global-nonprofit-cureduchenne-to-host-futures-national-conference-for-the-duchenne-and-becker-muscular-dystrophy-community/

Join NephCure on 29 April, at 7pm ET for a vital townhall discussion that will focus on the urgency of spreading awarene...
04/25/2025

Join NephCure on 29 April, at 7pm ET for a vital townhall discussion that will focus on the urgency of spreading awareness about APOL1-related kidney disease in Black communities, the importance of early prevention and genetic testing, and the latest advancements in research.

Let’s unite to amplify patient voices and drive meaningful change.

Including speakers:
-Keisha Gibson, MD, MPH: UNC Chapel Hill
-Corynne Corbett: Black Health Matters
-Barbara Harrison, MS, CGC: Harvard University

Visit https://bit.ly/4471m3R

A huge thank you to all of our contributors to this digital spotlight and sharing their insights on living with and supp...
04/25/2025

A huge thank you to all of our contributors to this digital spotlight and sharing their insights on living with and supporting people living with IgG4-RD). Thank you to the sponsors Amgen for helping these important conversations take place. You can read all the articles here: https://www.rarerevolutionmagazine.com/digital_spotlights/igg4-rd/

🌟 Exciting News! 🌟PSPA has just announced £350,000 in new funding for research into Progressive Supranuclear Palsy (PSP)...
04/25/2025

🌟 Exciting News! 🌟

PSPA has just announced £350,000 in new funding for research into Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD). This funding aims to improve diagnosis, treatment, and care standards across the UK. 🧠💙

Researchers and healthcare professionals are encouraged to apply for grants to help unlock key elements of these conditions. Let's create a better future for everyone affected by PSP & CBD! 🙌

Learn more: https://rarerevolutionmagazine.com/uk-charity-releases-new-funding-for-research-into-psp-cbd/

Dr Alireza Meysami, a leading expert in IgG4-related disease, shares the challenges healthcare providers face in diagnos...
04/24/2025

Dr Alireza Meysami, a leading expert in IgG4-related disease, shares the challenges healthcare providers face in diagnosing and treating this multi-systemic condition, and the opportunities he sees for increasing education among the medical community. His insights offer a comprehensive view on the evolving landscape of this rare and misunderstood disease. Read here: https://rarerevolutionmagazine.com/digitalspotlight/navigating-the-complexities-of-igg4-related-disease-an-experts-insights-on-improving-care-and-awareness-dr-alireza-meysami

🌟 Save the Date! 🌟 SMA Europe Join the 1st International Clinical Care Symposium on Spinal Muscular Atrophy (SMA) on 29-...
04/23/2025

🌟 Save the Date! 🌟 SMA Europe

Join the 1st International Clinical Care Symposium on Spinal Muscular Atrophy (SMA) on 29-30 August 2025 at the Quark Hotel, Milan, Italy. This event will focus on Medical Emergencies in SMA and bring together international experts to address critical gaps in understanding and managing life-threatening emergencies in SMA patients.

📅 Date: 29-30 August 2025 📍 Location: Quark Hotel, Milan, Italy

🔗 For more information, visit https://rarerevolutionmagazine.com/save-the-date-1st-international-clinical-care-symposium-on-spinal-muscular-atrophy/

Having endured over 20 years of pain and isolation, Silvia Borgers is now starting to rebuild her life and plan for the ...
04/23/2025

Having endured over 20 years of pain and isolation, Silvia Borgers is now starting to rebuild her life and plan for the future. Still living under a shadow of some doubt and uncertainty about her condition and potential flare-ups, she advocates for greater awareness of conditions like hers—providing much-needed support and understanding of the physical and mental burden rare diseases can impose. Read her story here: https://rarerevolutionmagazine.com/digitalspotlight/rare-but-real-finding-recognition-and-support-for-igg4-rd/

Coming soon…. Our Spring 2025 edition - RARE Siblings. This edition is given over to the voices that are seldom heard—t...
04/23/2025

Coming soon…. Our Spring 2025 edition - RARE Siblings. This edition is given over to the voices that are seldom heard—the voices of our rare and super siblings.
Never miss a launch - Join the RARE Revolution and get the latest magazine delivered FREE to your inbox.
Sign up here: https://bit.ly/JoinTheRARERevolution

That’s a wrap on our World PI Week takeover. Today, we’ve shared stories, raised awareness, and highlighted the importan...
04/22/2025

That’s a wrap on our World PI Week takeover.

Today, we’ve shared stories, raised awareness, and highlighted the importance of early diagnosis and better care for those living with primary immunodeficiencies (PI). But the conversation doesn’t stop here!

✨ Here’s how you can continue to make a difference:
✅ Learn more about PI and its symptoms – early diagnosis saves lives.
✅ Share what you’ve learned to help raise awareness.
✅ Support and advocate for better care and treatment.

A huge thank you to Rare Revolution Magazine for hosting us and to everyone who engaged, shared, and supported this important cause.

Stay connected with us at Immunodeficiency UK – because no one should face PI alone.

Immunodeficiency UK

Brooklyn was diagnosed with CD40 ligand deficiency, a rare immunodeficiency, as a baby. Frequent infections made life un...
04/22/2025

Brooklyn was diagnosed with CD40 ligand deficiency, a rare immunodeficiency, as a baby. Frequent infections made life unpredictable—until he received immunoglobulin therapy and a life-saving stem cell transplant.

Did you know?

🔹 Immunoglobulin therapy is made from plasma donations.
🔹 People with immunodeficiency rely on it to help them fight infections.
🔹 There’s no artificial substitute—they rely on donors like YOU.

Donate plasma. Change a life. Visit blood.co.uk/plasma to book your donation today. Immunodeficiency UK

💬 “CVID is part of who I am, and I manage it rather than letting it manage me.” – Emma, diagnosed with CVID at 16. 🌍 Thi...
04/22/2025

💬 “CVID is part of who I am, and I manage it rather than letting it manage me.” – Emma, diagnosed with CVID at 16.

🌍 This , we’re amplifying voices like Emma’s. Immunodeficiencies affect children and adults, often unseen by the world.

If you’re living with PID, know that you are not alone.

📢 Let’s make the invisible, visible. Share this post to help others understand Primary Immunodeficiency.



Read Emma’s story https://www.immunodeficiencyuk.org/immunodeficiency/patient-stories/stories-of-adults-with-pids/emmas-story/ Immunodeficiency UK

💬 “I remember being regularly unwell from the age of about seven, usually with sinus and ear infections, and making freq...
04/22/2025

💬 “I remember being regularly unwell from the age of about seven, usually with sinus and ear infections, and making frequent visits to the doctor for antibiotics.” – Paul, diagnosed with hypogammaglobulinemia in his 30s.

Misdiagnosis is common with PIDs. People live with repeated infections, exhaustion, and hospital visits—never knowing why.

this . Help us raise awareness so that fewer people go through what Paul did.

Have you struggled with repeated infections? It might be worth asking your doctor about PID testing. (symptoms poster)



Read Paul’s story https://www.immunodeficiencyuk.org/immunodeficiency/patient-stories/stories-of-adults-with-pids/pauls-story/ Immunodeficiency UK

💬 “For the first few months of Oscar’s life, I couldn’t touch him without wearing gloves and an apron because of the ris...
04/22/2025

💬 “For the first few months of Oscar’s life, I couldn’t touch him without wearing gloves and an apron because of the risk of infection.” – Oscar’s mum

👶 Oscar was born with Complete DiGeorge Syndrome, a life-threatening PID. His only hope? A ground-breaking thymus transplant at just a few months old.

Today, Oscar is thriving! But many children with PIDs face long journeys to diagnosis and treatment.

📢 Join us this to and support early diagnosis for immunodeficiencies. Every child deserves a fighting chance!



Read Oscar’s story https://www.immunodeficiencyuk.org/immunodeficiency/patient-stories/parent-and-children-stories/oscars-story/ Immunodeficiency UK

💬 “For years I was fed up with the constant bouts of general sickness I endured. There were days when I felt so unwell t...
04/22/2025

💬 “For years I was fed up with the constant bouts of general sickness I endured. There were days when I felt so unwell that I couldn’t go to work.” – Bethany, living with APDS

Bethany’s story is not unique. Many people with Primary Immunodeficiency (PID) struggle for years before getting a diagnosis.

This , help us and raise awareness about PIDs. Early diagnosis changes lives!

Share to support those living with immunodeficiency.

Read Bethany’s story https://www.immunodeficiencyuk.org/immunodeficiency/patient-stories/stories-of-adults-with-pids/bethanys-story-of-having-apds/

Immunodeficiency UK

We’re Immunodeficiency UK, a national patient-focused charity dedicated to supporting, educating, and advocating for peo...
04/22/2025

We’re Immunodeficiency UK, a national patient-focused charity dedicated to supporting, educating, and advocating for people affected by immunodeficiency.

💡 What are PIDs?
Primary immunodeficiencies are a group of rare, genetic disorders where the immune system doesn’t function properly, making people more vulnerable to infections and other complications. Many cases go undiagnosed, but early recognition and treatment can be life-changing.

💙 How We Help:
🔹 Support – We provide information, resources, and advice.
🔹 Awareness – We work to improve the understanding of PI among healthcare professionals and the public.
🔹 Advocacy – We push for better treatments, care, and research funding.

This World PI Week, we’re here to raise awareness, share inspiring stories, and empower people living with PI. Join us in making the invisible, visible!

📲 Follow us to learn more and get involved: https://www.facebook.com/ImmunodeficiencyUK

Immunodeficiency UK

Address

Allen, TX

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