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.

Charity & advocacy

For George: The MVA Society

By CONTRIBUTOR

20 November 2024

RARE caregiving

Challenges of caring for a rare disease patient—a discussion

By Becky Pender

20 November 2024

Turning the tide for rare disease

Access to spinal muscular atrophy (SMA) treatment in Denmark: a success story of how persistence can win in the end.

By CONTRIBUTOR

15 November 2024

Industry Insights

Real-world data in EAPs: makes sense for rare diseases

By CONTRIBUTOR

13 November 2024

RARE News

DEBRA partners with NHS England to better understand epidermolysis bullosa (EB)

By Becky Pender

11 November 2024

RARE News

HBA Support achieves registered charity status

By admin

7 November 2024

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@rarerevolutionmagazine

rarerevolutionmagazine

From The Guardian: ‘Exciting’ new lupus treatm

From The Guardian: ‘Exciting’ new lupus treatment could end need for lifelong medication

"Doctors are hailing a “groundbreaking” new treatment for #Lupus that genetically modifies a patient’s cells to fight the autoimmune disease and could end the need for lifelong medication.

About 5 million people worldwide are thought to have the condition, which mostly affects women.

In the UK, three patients have received #CARTCellTherapy for the most serious form of lupus, which can be life-threatening and cause damage to the heart, lungs, brain and kidneys.

In Germany, patients who have had the new treatment are now in remission and do not need to take lupus drugs."

Read the full story at https://bit.ly/3UHPVtO

So much time and energy goes into finding a diagno

So much time and energy goes into finding a diagnosis, but what happens when your child finally gets that #Diagnosis?

Our community engagement senior associate, Becky, shares her top tips for parenting a child with a #RareDisease.

Read all of our RARE resources at https://bit.ly/3ipqkpz

What sustainable policy measures and support syste

What sustainable policy measures and support systems are necessary to ensure the successful integration of genomic medicine into national healthcare systems in Latin America? Join our next RARE REV-inar as we discuss “A Blueprint to advance genomic medicine in Latin America” on November 19th 2024 at 7pm BST/2pm CT.

Sign up for free here: https://bit.ly/LATAM-RARE-REVinar
@illuminainc @americashealthfoundation

Have you read David Napier's Day in the Life? Here

Have you read David Napier's Day in the Life? Here, he talks about his journey with #StiffPersonSyndrome (#SPS), his unrelenting depression and leaning on his wife for support.

Read David's A Day in the Life at https://bit.ly/49f6q5M

Are YOU prepared for #RareDiseaseDay 2025? If not,

Are YOU prepared for #RareDiseaseDay 2025? If not, have you considered joining our Rare Disease Day social media takeover?

On 28 February 2025, you'll have the opportunity to showcase your charity or not-for-profit while also spreading much-needed #RareDisease awareness across our social media platforms.

HURRY! We currenly have only 11 spaces remaining, and once they're gone, they're gone!

Contact hello@rarerevolutionmagazine.com to register your interest.

Today is #SchinzelGiedionSyndromeAwarenessDay. A p

Today is #SchinzelGiedionSyndromeAwarenessDay. A perfect opportunity to highlight our wonderful Charity Partners, the @schinzel_giedion_syndrome.

The Schinzel-Giedion Syndrome Foundation is a registered UK charity established in 019 by an international group of parents of children with #SGS.

The foundation was created to represent children with SGS and their families living all around the world. Its mission is to provide support to families caring for a child with SGS to raise awareness and to facilitate and support medical research that will help find better treatments and improve quality of life for children living with SGS.

Its vision is for a future when all children with SGS will receive a rapid genetic diagnosis and have access to effective medical and gene therapies to ensure they live longer, healthier and happier lives.

Find out more about them at sgsfoundation.org

NEW to Industry Insights, John Lagus, founder of B

NEW to Industry Insights, John Lagus, founder of Bluestem Pharma Consulting, LLC discusses real-world data in early access programmes. It makes sense for rare diseases. Read here:
https://rarerevolutionmagazine.com/real-world-data-in-eaps-makes-sense-for-rare-diseases/
#IndustryInsights

QOTD: "Despite having #SickleCell, I will continue

QOTD: "Despite having #SickleCell, I will continue to thrive and not let it define me!"

Today, let's celebrate the #RareDisease community that supports each other, learns from each other and lives together in hope for not only treatment and care, but for a brighter future.

Read James Griffin's article at https://bit.ly/3XFkfpz

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