Novo Nordisk said that the information affected by the breach shouldn’t allow third parties to “identify participants in our clinical trials” despite “unauthorized access” to patients’ personal data.

Original title: “Novo hit with cybersecurity breach, urges vigilance among trial participants”

i felt like a lone ranger experiences of australian families living with kif1a associated neurological disorder

Original title: “"I felt like a lone ranger": experiences of Australian families living with KIF1A-Associated Neurological Disorder.”

Rather than getting hung up on what to call DEI in the workplace, leaders should take three specific actions to help their employees embrace and engage with it. Companies and the patients they serve will benefit.

Original title: “Surviving (and thriving with) DEI in biotech”

The EveryLife Foundation for Rare Diseases was honored to be invited by the FDA to participate in a closed roundtable discussion with FDA leadership on Wednesday, June 3.  Our Chief Mission Officer,  Annie Kennedy, and Board […]

Original title: “FDA Rare Disease Roundtable – June 3, 2026”

Our 13th European Conference on Rare Diseases & Orphan Products (ECRD 2026) has finished after two days of landmark discussions and strong political momentum. The post Highlights from Prague: ECRD 2026 sets the course for coordinated action appeared first on EURORDIS-Rare Diseases Europe.

Original title: “Highlights from Prague: ECRD 2026 sets the course for coordinated action”

The EveryLife Foundation for Rare Diseases was honored to be invited by the FDA to participate in a closed roundtable discussion with FDA leadership on Wednesday, June 3.  Our Chief Mission Officer,  Annie Kennedy, and Board […] The post FDA Rare Disease Roundtable – June 3, 2026 appeared first on EveryLife Foundation for Rare Diseases.

Original title: “FDA Rare Disease Roundtable – June 3, 2026”

It’s not unusual for it to take unemployed biopharma professionals awhile to land new jobs. Three experts discuss when employment gaps are an issue and how to explain them to prospective employers.

Original title: “How long is too long? Weighing and accounting for employment gaps”

EMA’s Emergency Task Force (ETF) is engaging with the African Medicines Agency (AMA) and its national regulatory authorities (NRAs), leveraging expertise from the WHO-AFRO…

Original title: “EMA, AMA and African regulatory authorities join forces on Ebola outbreak response”

Find information on symptoms, diagnosis, treatment, data, research, and free resources.

Original title: “Attention-Deficit / Hyperactivity Disorder (ADHD)”

June is PRIDE month and EMA starts a two-month celebration of diversity and inclusion in science and healthcare, leading up to its participation in the world-famous Amsterdam…, Our strength in the EU comes from our unity in diversity. Equality and non-discrimination are critical everywhere, but in health they can make the difference between…, EMA staff will be joined on the boat by representatives of patient organisations such as EURORDIS-Rare Diseases Europe, European AIDS Treatment G

Original title: “United for Health: EMA in WorldPride 2026”

development of the first myasthenia gravis patient registry in latvia a single centre experience

Original title: “Development of the first myasthenia gravis patient registry in Latvia: a single-centre experience.”

More than half of biotech and pharma job seekers have been looking for their next opportunity for six months or longer, and more than a quarter have searched for over a year, according to a BioSpace LinkedIn poll. Job seekers share their frustrations.

Original title: “The long wait: biopharma job searches often take at least 6 months, BioSpace finds”

The mum of a six-year-old boy, who has a rare condition, has spoken of her pride at his school’s decision to celebrate a day devoted to children who face extraordinary challenges. And Reggie was the star of the show at a Rare Disease Day held at his school, Wheatley Lane Primary in Fence. Reggie Alpaslan with two classmates at the Rare Disease Day at his school, Wheatley Lane Primary in Fence. Pupils also dressed in bright colours which raised £157 for Rare Disease UK, a pioneering national campaign by Genetic Alliance UK that represents and unites everyone in the rare disease community. Rare Disease Day is an annual global observance held to raise awareness and improve treatment access for people living with rare conditions.

Original title: “Wheatley Lane Primary School in Fence holds Rare Disease Day in honour of pupil”

Titled, “Making What Matters Count: Advancing Patient-Centered Rare Disease Therapy Development Methodologies, Tools, and Knowledge Management,” the event was held on May 12 in Washington, D.C. EveryLife Foundation said it will synthesize the workshop’s key findings and recommendations in the coming weeks to support its policy and advocacy ... Titled, “Making What Matters Count: Advancing Patient-Centered Rare Disease Therapy Development Methodologies, Tools, and Knowledge Management,” the event was held on May 12 in Washington, D.C. EveryLife Foundation said it will synthesize the workshop’s key findings and recommendations in the coming weeks to support its policy and advocacy work, with the goal of advancing a more consistent, transparent, and patient-centered framework for rare disease therapy development. EveryLife Foundation’s Scientific Workshop explored patient-centered ways to improve rare disease therapy development and treatment reviews. EveryLife Foundation for Rare Diseases’ 15th Scientific Workshop recently brought together leaders from the rare disease patient, scientific, government, and biopharmaceutical communities to discuss practical, patient-centered solutions for developing therapies for rare diseases amid evolving FDA pathways and programs. These include the START Pilot Program, which gives selected rare disease therapy developers more frequent FDA advice on issues such as clinical study design; the Rare Disease Evidence Principles, a proposed process for drugs targeting very small rare disease populations with significant unmet need and a known genetic defect; the Rare Disease Innovation Hub, which aims to increase collaboration across the FDA; and FDA’s framework for accelerating development of individualized therapies for ultra-rare diseases, a draft framework meant to support development and review of certain individualized therapies. According to EveryLife, recent FDA activity includes three finalized patient-focused drug development guidances, five pilot programs to improve rare disease regulatory science, and 12 FDA initiatives.

Original title: “EveryLife Foundation event tackles rare disease drug development”

The people most trusted to deliver are not always the ones invited to shape direction. Executive coach Angela Justice examines why the habits that build a career can eventually limit advancement.

Original title: “Curse of the straight-A student”