It's time to turn the tide!

To bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community.

To bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community.

Patient voice

My journey with adrenocortical cancer: from diagnosis to advocacy

By CONTRIBUTOR

6 November 2024

Turning the tide for rare disease

The Acromegaly Community: An international haven for people living with acromegaly

By CONTRIBUTOR

1 November 2024

RARE News

DREAMS: a year of innovation and progress in the quest for neuromuscular disease therapies

By admin

31 October 2024

RARE News

Walk with WAPO through the Experiences of People Living with Acromegaly

By admin

30 October 2024

RARE News

MENA Congress for Rare Diseases 2025

By admin

29 October 2024

RARE News

CureDuchenne partners with Blizzard Entertainment and World of Warcraft for limited-time charity pet program

By admin

29 October 2024

Follow us

@rarerevolutionmagazine

rarerevolutionmagazine

Join @smaeurope for its 5th International Scientif

Join @smaeurope for its 5th International Scientific Congress on #SpinalMuscularAtrophy in Budapest on 12-14th March 2026.

This prestigious event will bring together leading researchers, clinicians, patient advocates and experts in the field of #SMA for three days of cutting-edge research presentations, collaborative discussions and more.

The last Congress in Ghent brought together over 1000 participants from six continents. And for the first time, all seats were sold out.

Save the date and be sure to secure tickets when they go live soon. For more information about upcoming events, visit sma-europe.eu/sma-events

FOXG1 Parents and Caregivers are coming together f

FOXG1 Parents and Caregivers are coming together from all over the world to Fort Lauderdale, Florida!

Parents will learn about the path to treatments for #FOXG1Syndrome, the FOXG1 gene therapy roadmap, the latest clinical findings of the FOXG1 patient journey, and get insights on standard of care from leading FOXG1 clinicians.

It’s a unique opportunity for parents to connect with the scientists working towards a cure, doctors, and other FOXG1 families from all over the world!

The conference will kick off with a keynote address by Terry Pirovolakis, CEO of Elpida Therapeutics and a passionate advocate for rare disease families. The closing keynote will be delivered by Effie Parks, advocate and host of the inspirational rare disease podcast Once Upon A Gene.

For more information about @foxg1research , please visit: foxg1research.org/2024-foxg1-conference

On the eve of her 35th birthday, Sandra was diagno

On the eve of her 35th birthday, Sandra was diagnosed with #AdrenocorticalCancer (#ACC), a rare cancer affecting less than one in a million people.

She talks of her struggle, perseverance and eventually, her journey into advocacy. In this article, she hopes to shed light on this #OrphanDisease and inspire others amid similar battles.

Read at https://bit.ly/3NYu3Xv

MENA Congress for Rare Diseases 2025. Read at htt

MENA Congress for Rare Diseases 2025.

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

#PressRelease @mena_rare_diseases

"We are super excited about #RAREfest24 (22 & 23 N

"We are super excited about #RAREfest24 (22 & 23 Nov) & can't wait to welcome our community, friends, colleagues, patient partners and curious newbies to the concept of rare!
Please give us a follow at @camraredisease & share our posts to help us let everyone know that our Unique event is on, FREE and open to all!
https://www.camraredisease.org/rarefest24/ @camraredisease"

"Turning Research on its Head! The Rare Disease

"Turning Research on its Head!

The Rare Disease Research Network (RDRN) is a partnership project between @camraredisease and the Patient Led Research Hub, funded by the National Institute for Health and Social Care Research (NIHR) and sponsored by Cambridge University Hospitals NHS Foundation Trust.

The project aims to support the rare disease community in building an online network of partnerships and resources to facilitate new patient-centred research opportunities. It is being co-produced by members of the rare community, with wider engagement supported through additional outreach.

The shiny new networking platform will be launching at #RAREfest24 !

#RDRN #RareDisease #RareResearch #RareDiseaseResearch #PatientLed #PatientInspired #PatientsAsExperts"
@camraredisease

"Why attend RAREfest24? Become inspired like Jenny

"To launch #RAREfest24, join the rare disease comm

"To launch #RAREfest24, join the rare disease community for an evening of creativity, connection, and discovery at the 'Strictly Rare' event on Fri 23 November!

Hosted by Hope Winter @hopewintermusic - singer-songwriter and Rare Disease advocate - the 'Strictly Rare' launch promises an uplifting night of rare music, talks, comedy, and research-inspired art.

Who's Who at 'Strictly Rare'?

Linseigh Green @linseigh is an actor, classically trained singer, writer, rare disease advocate, and immersive audio producer. In her RAREfest performance ""I Am What I Am,"" Linseigh delivers a musical celebration of embracing differences.

Amit Ghose @amitghosenf1 - living with neurofibromatosis type 1 (NF1), has learned to find confidence in his unique appearance. His message: embrace your individuality—our differences make us human.

Daval Armratlal daval_amratlal is a passionate scientist with the rare condition Epidermolysis Bullosa Simplex (EBS) who finds solace in the intellectual excitement of planetary science. Daval will share the wonders of the cosmos and how the mysteries of space parallel the intricacies of rare diseases.

@philjerky an amateur stand-up comedian, was diagnosed with Young Onset Parkinson’s Disease at age 36. Phil returns to share the lighter and more ridiculous parts of his condition through comedy, claiming he’s better at telling jokes than at playing Jenga.

Members of CamRARE’s Unique Feet community will take the stage with ‘Strictly RARE’, a performance by children and young people with rare conditions. Together, they’ll create a musical piece exploring frustrations with societal assumptions, the strength of shared experiences, and the joy of music and movement.

This diverse lineup celebrates rare experiences and talents, creating a powerful night of connection. We can't wait to see you there!!

#RareDisease #Strictly #StrictlyRare #RAREfest @camraredisease"

Load More… Follow on Instagram

Contact us