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

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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"

"RAREfest24 Interactive Exhibition Science. Techno

"RAREfest24 Interactive Exhibition
Science. Technology. Community. Arts

We’re can't wait to welcome you to #RAREfest for 2024!! An award-winning festival as unique as you are. For curious minds of all ages.

🗓️ Sat 23 November 2024 (& Fri 22 for launch evening)
📍 Guildhall, Cambridge UK
🎟️ FREE!

Immerse yourself in a bustling marketplace of hands-on exhibits, interactive talks, films, and stunning research-inspired art.

Discover the latest in innovative science, and cutting-edge technology and meet leading researchers, tech innovators, treatment pioneers, and individuals with rare conditions as they share their powerful stories.

Find out more and book tickets pop over to the @camraredisease website: https://www.camraredisease.org/rarefest24/

Image description: A collage of photos from the previous rare fest event. A mixture of children and adults doing various activities: using a pipette, wearing a VR headset, looking in a microscope, listening through headphones and crafting.

#CamRARE #STEMevents #RareDisease #RareConditions #RareResearch #RareInnovations #STEMed #MedEd" @CamRareDisease

"Hello from @CamRareDisease! We’re a charity cre

"Hello from @CamRareDisease! We’re a charity creating vibrant, informed, & active cross-sector networks in the #RareDisease community, putting the patient voice front & centre.
For today’s #TuesdayTakeover, we’re excited to tell you all about #RAREfest24 in Cambridge on 22 & 23 Novebmber!
www.camraredisease.org"

Walk with @wapo_pituitary through the Experiences

Walk with @wapo_pituitary through the Experiences of People Living with #Acromegaly.

Read at https://bit.ly/3CiOY4A

#PressRelease

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