Social Media Ideas for Rare Diseases

Is Rare Disease a good place to be?

Is Rare Disease a good place to be? Anonymous (not verified) Wed, 10/07/2026 - 04:08 field_thread_url https://cafepharma.com/boards/threads/is-rare-disease...

Is Rare Disease a good place to be?

Is Rare Disease a good place to be? Anonymous (not verified) Sat, 10/03/2026 - 04:06 field_thread_url https://cafepharma.com/boards/threads/is-rare-disease...

<![CDATA[Finding the Few: Combining Clinical Insight, Data and Media to Reach Patients with Rare Diseases]]>

FDA, Duke-Margolis workshop to examine evidence standards for rare diseases

<![CDATA[FDA Launches Rare Disease Framework Initiative ]]>

Podcast Series “Wheel Talk” Designed To Amplify Stories Of People Living With A Rare Disease

According to statistics shared by Rare Disease Day, a global advocacy movement lead by patients, there are 300 million people worldwide living with a rare disease. In the United St...

Probably Genetic raises $12M to scale rare disease dataset, support drug discovery

The company’s core product is a physician-ordered genetic test for undiagnosed rare disease patients, who typically face a seven-year diagnostic odyssey before getting answers.

Seltene Erkrankung: Eine Einzige von 83 Millionen

Die sechsjährige Caroline leidet am PUS3-Syndrom - als einzig bekannte Betroffene in Deutschland. Ihre Eltern haben wenig Hoffnung auf Besserung – aber einen Plan. mehr...

Cherokee Nation leaders expand rare disease care and advocacy

The Cherokee Nation held its third annual Rare Disease Summit to advance policy, care, and early intervention initiatives for tribal citizens affected by rare conditions.

Rare Disease Refresh: FDA’s Rare Disease Framework Initiative

By James E. Valentine & Charles G. Raver & Frank J. Sasinowski —

A Doctor-Patient Perspective: How to Combat Stigma Against Rare Diseases

In medical school, students routinely examine one another to practice clinical skills before applying them in real-world settings. The post A Doctor-Patient Perspective: How to Com...

<![CDATA[Solving the Rare Disease Launch Paradox: Using Pre-Launch Planning and Partnership to Create]]>

Unraveling Medical Mysteries

Patients with undiagnosed conditions suffer not only from their symptoms but also from the uncertainly of not knowing what afflicts them.

Inherited lupus can begin early—and continue silently

A multicenter study led by researchers at Sultan Qaboos University has found that patients with a rare inherited form of lupus may continue to accumulate organ damage even when con...

Shionogi Grows Rare Disease Portfolio with $2B IntraBio Acquisition

Shionogi signaled its intent to focus on rare disease drugs in April when it acquired Radicava (edaravone), an amyotrophic lateral sclerosis (ALS) treatment, from Tanabe Pharma for...

'One in a million' — the devastating brain disease my dear friend died from in months

Sporadic CJD is the most common form, but variant and familial types also affect humans.

Ultragenyx: Angelman Study Setback Creates More Risk For Rare Disease Specialist

Major breakthrough in treatment for ultra-rare 'second skeleton' disease

Patients grow extra bones where they don’t belong, including within muscles and tendons

Living with glycogen storage disease into adulthood

Both Julieta and Rob went through long, uncertain paths to receiving a correct diagnosis. Julieta was born in 1987 outside a major city in Argentina. Very little information about...

Shionogi pays $2B to acquire a rare disease startup

The acquisition of Texas-based IntraBio adds to a growing rare disease business for Shionogi by handing the company a marketed treatment for two inherited conditions.

Speak Foundation Brings LGMD Advocates Representing More Than 20 states to Capitol Hill, Honors Bipartisan Rare Disease...

Patient-led organization urges Congress to strengthen LGMD research and help promising rare-

The Toll on Family Caregivers of Children with a Rare Disease

Family caregivers of children with rare diseases face overwhelming emotional, financial, and physical strain. <p>The post The Toll on Family Caregivers of Children with a Rar...

SarcoidosisUK

https://www.sarcoidosisuk.org/ Twitter: @SarcoidosisUK

Rare disease patients urge govt for interim funding arrangement to ensure continuation of treatment

This appeal is being made not to interfere with the judicial process, but to ensure that patients do not become casualties of the time taken by that process