This guide explores the evolving role of podcasts, webinars, and thought leadership programs in biopharma and provides practical recommendations for public relations agencies, corporate communications teams, and commercial marketers looking to elevate their visibility and influence.

Original title: “Report: The Insider's Guide to Thought Leadership in Biopharma”

What is NCBRS? Nicolaides–Baraitser syndrome (NCBRS) is a rare genetic condition caused by de novo missense mutations in the SMARCA2 gene and has only been… Continue reading NCBRS syndrome We never ever heard about NCBRS before until the geneticist confirmed that it was an extremely rare syndrome in the world and in our local portals no any information about this syndrome at all. Then scrolling at the internet suddenly I found some information about NCBRS and global worldwide foundation website. Nojus doctor send him to urologist to check with an ultrasound scanner found a pathology of both undescended testicles named – cryptorchidism. Nojus is very patient boy he underwent three surgeries by the age of 2 and 3 months already…however, despite all efforts and surgeries, the fertility prognosis is not positive for the future. What is NCBRS? Nicolaides–Baraitser syndrome (NCBRS) is a rare genetic condition caused by de novo missense mutations in the SMARCA2 gene and has only been reported in fewer than 330 cases worldwide.

Original title: “NCBRS syndrome | Rare Disease Day 2026”

Hello I am a 46 year old veteran, mom, to one adult son and two small girls, and I am Seronegative Stiff Person Syndrome. Which… Continue reading It took 22 years Hello I am a 46 year old veteran, mom, to one adult son and two small girls, and I am Seronegative Stiff Person Syndrome. Which means I am the rarest of a 1 in a million disorder.

Original title: “It took 22 years | Rare Disease Day 2026”

My name is Morgan Jones, I am 30 years old, I dealt with this disease for a very long time. Its been a hard battle,… Continue reading The strong one My name is Morgan Jones, I am 30 years old, I dealt with this disease for a very long time. Its been a hard battle, I was in remission from april till febuary of 2025.

Original title: “The strong one | Rare Disease Day 2026”

Join BioSpace's Managing Editor, Director of Insights and Vice President of Marketing for an inside look at how PR, communications and marketing teams can successfully leverage webinars, podcasts and integrated content campaigns to elevate executive voices, share industry expertise and engage key biotech and pharma audiences.

Original title: “Webinar: The Insider's Guide to Leveraging Podcasts, Webinars and Thought Leadership Programs”

Mariah nasceu sem nenhuma intercorrência, saudável. Porém, desde muito pequena, sentia muitas cólicas, chorava quase o tempo todo e, com o passar dos meses, começamos… Continue reading Diagnóstico não é destino

Original title: “Diagnóstico não é destino | Rare Disease Day 2026”

in memoriam daniel l kastner md 1951 2026

Original title: “In Memoriam: Daniel L. Kastner, MD (1951–2026).”

Lucid Group appointed Eric Muller as Chief Executive Officer

Original title: “Eric Muller”

Andrew Fenny has been appointed President of Pace Life Sciences

Original title: “Andrew Fenny”

A career setback can teach you something useful—or teach you the wrong lesson. Executive coach Angela Justice explains how one difficult experience can quietly shape the choices that follow.

Original title: “A career setback is a data point, not a verdict”

DFE Pharma has made Khatera Alawi Global Director HR

Original title: “Khatera Alawi”

A new name and look, with the same commitment to advancing policy, advocacy, and progress for the rare disease community.

Original title: “EveryLife Foundation for Rare Diseases is now the RARE Foundation”

Future-ready pharma teams: building knowledge and capability to navigate a changing NHS

Original title: “Evolution”

C.D. Leganés is carrying out during ... the Spanish Federation of Rare Diseases (FEDER), to promote the visibility of the needs of people affected by these pathologies. As a highlight of this campaign, the club wanted to take part in the World Day for Rare Diseases, which was ... C.D. Leganés is carrying out during this season 2023/24 the campaign "Rare diseases, unique people" in collaboration with the Spanish Federation of Rare Diseases (FEDER), to promote the visibility of the needs of people affected by these pathologies. As a highlight of this campaign, the club wanted to take part in the World Day for Rare Diseases, which was celebrated on February 29th, with various actions aimed at raising funds for research and the search for possible treatments. In addition, the Federación de Peñas of the club participated in the auction, obtaining the shirt of captain Sergio González, which will be framed and displayed in the Peñista Space located at the Estadio Municipal Butarque. Additionally, the Peñas Federation will donate to FEDER another €3,600 from the sale of charity scarves with the slogan "Rare diseases, unique people".

Original title: “Leganes gets involved in the campaign "Rare diseases, unique people". - C.D. Leganés Foundation”

In this last week of May, the following rare diseases are commemorated: May 27: Type II Collagenopathies Day. Mutations in the COL2A1 gene are responsible for a series of abnormalities known as Type II Collagenopathies. The club has dedicated its third kit to this cause, with the colors associated with rare diseases, with a percentage of sales going to the Spanish Federation for Rare Diseases (FEDER). In addition, the captain's armband for this campaign also sports the colors that appear in the logo of World Rare Disease Day, which is celebrated every 29 February. June 1: Lymphagioleiomyomatosis Day. A rare multiple cystic lung disease characterized by progressive cystic lung destruction and lymphatic disturbances, often associated with renal angiomyolipomas (AMLs). C.D. Leganés has set as one of its objectives for the current season 2023/24 to give visibility to people suffering from rare diseases, as well as to raise awareness in society about the problems and needs of this group and their families and closest environment. May 30: Prader Willi Syndrome Day. It is a rare genetic disorder. It causes decreased muscle strength, low levels of sex hormones and a constant feeling of hunger. The part of the brain that controls satiety or hunger does not work as it should in people with this syndrome.

Original title: “These are the #RareDiseases we are making visible this week. - C.D. Leganés Foundation”