Cullin–RING receptors in rare disease biology Natalia A. Szulc1 Send email to nszulc@iimcb.gov.pl ∙ Wojciech Pokrzywa +...

Cullin–RING receptors in rare disease biology Natalia A. Szulc1 Send email to nszulc@iimcb.gov.pl ∙ Wojciech Pokrzywa https://www.cell.com/trends/cell-biology/fulltext/S0962-8924(26)00003-6?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS0962892426000036%3Fshowall%3Dtrue Trends in Cell Biology Natalia Szulc and Wojciech Pokrzywa, from the International Institute of Molecular and Cell Biology in Warsaw (IIMCB), published a review article in the August issue of Trends in Cell Biology. Their article, Cullin-RING Receptors in Rare Disease Biology, presents the first systematic catalogue of 267 receptors responsible for recognising proteins destined for degradation, 93 of which are linked to genetic disorders. The review also explores the different factors that may influence how these diseases develop and progress over time. Be sure to take a look at the August issue's cover too! Each design element was carefully chosen to reflect the scientific complexity and emotional impact of rare diseases. https://www.sciencedirect.com/journal/trends-in-cell-biology/vol/36/issue/8 CamRARE’s RAREsummit26 Cambridge Rare Disease Network’s (CamRARE) RAREsummit returns on 7 October, taking place in person at Hinxton Hall Conference Centre, Cambridge, and online. This is a unique opportunity to connect and collaborate with individuals across the rare disease community and help drive progress. Hear presentations, engage with panel discussions, explore the exhibitors and take part in workshops designed to spark ideas and action. All attendees, in person and online, will be able to take part in Q&As, polls and networking, ensuring everyone can be part of the conversation, wherever they are. Book your ticket now! https://www.eventbrite.co.uk/e/camrares-raresummit26-tickets-1981162447211?aff=newspartner Tilly Rose: #BePatient Campaign Tilly Rose, an avid patient advocate, content creator, author of the bestselling book Be Patient and winner of the Black Pearl Social Media Award 2026, has recently launched her #BePatient Campaign. Inspired by her recent return to hospital, the campaign aims to promote hope and patient advocacy. To support Tilly Rose's campaign and her journey, join the #BePatient Campaign and follow her story on her Instagram @thattillyrose. https://www.bepatientbook.com/

The JARDIN Hackathon to Seek Solutions to Overcome Technical Barriers in Health Data Exchange: From the Point of Care to European Registry Networks +...

https://datascience.codata.org/articles/10.5334/dsj-2026-029 The JARDIN Hackathon to Seek Solutions to Overcome Technical Barriers in Health Data Exchange: From the Point of Care to European Registry Networks This paper explores the methods and outcomes of a JARDIN hackathon, highlighting the importance of effective health data exchange across healthcare providers, national registries and ERNs. The authors, including Veronica Popa, our Digital Patient Engagement Manager, present potential solutions for improving the harmonisation of rare disease data across organisations. Ethics in clinical trials https://openacademy.eurordis.org/ Interested in understanding the ethical principles that guide clinical research and protect participants' rights and wellbeing? The EURORDIS Open Academy course on ethics in clinical trials explores why ethics matters in research, how modern ethical guidelines have developed, the importance of informed consent, and the four key principles of medical ethics. Enrol now! https://openacademy.eurordis.org/courses/ethics-in-clinical-trials/

We are not just carriers. +...

https://rememberthegirls.org/ 10 Minutes With... We have just broadcast our latest episode of 10 Minutes With..., in which our colleague Rhiannon Walls speaks with Taylor Kane, founder and Executive Director of Remember The Girls. Taylor Kane's advocacy journey began in childhood, shaped by her own and her family's experience of adrenoleukodystrophy (ALD). This conversation highlights the importance of young voices in rare disease advocacy, the value of young people having their voices heard directly and what it takes to turn lived experience into action. https://www.eurordis.org/10-minutes-with-rhiannon-walls/

Rare Disease Day webinars +...

https://www.rarediseaseday.org/webinars/ Rare Disease Day Interested in being involved in the Rare Disease Day 2027 campaign, ahead of 28 February 2027? To find out how you can get involved and how EURORDIS is preparing, join one of the two webinars taking place on Monday 19 October at 16:00 CEST and Tuesday 20 October at 09:00 CEST. There is no need to attend both sessions, as the same information will be covered in each.

Webinar Series: Kickstart your advocacy August 2026 +...

Webinar Series: Kickstart your advocacy August 2026 Young people have an important role to play in shaping the future for the rare disease community. But finding your voice, navigating traditional advocacy spaces, and knowing how to turn your ideas into action isn’t straightforward. https://www.eurordis.org/webinar-series-kickstart-your-advocacy/ This autumn, we will be running a series of webinars that recognise the importance of young people in shaping the future for the rare disease community. The series aims to strengthen young people's advocacy skills and support them in creating meaningful change. Our first webinar is on 24 September at 16:00 CEST on communication and storytelling. Register to join! This series has been exclusively supported by the Stavros Niarchos Foundation (SNF). https://www.snf.org/

Position Statement: An Urgent Call for EU-Level Collaboration on Newborn Screening

https://www.eurordis.org/publications/position-statement-eu-level-collaboration-on-newborn-screening/ EURORDIS has published a joint statement from rare disease community members and organisations, calling upon the European Union to establish a multi-stakeholder Newborn Screening Group to support Member States in strengthening NBS programmes. https://form.jotform.com/eurordisforms/endorse-eurordis-nbs-statement EURORDIS recently published a position statement on EU collaboration on newborn screening, calling on the EU to establish a multi-stakeholder Newborn Screening (NBS) Group. The proposed group would help Member States strengthen NBS programmes and address major inequalities across Europe. To mark NBS Awareness Month, organisations can still endorse the Position Statement and support the call for a more coordinated European approach until 30 September.

Mentorship The Open Academy x ERDERA Mentoring Programme

Mentoring for the Alumni Applications are now open Launched as a pilot in 2025, the Open Academy x ERDERA Mentoring Programme aims to provide leadership development and capacity-building opportunities for Open Academy Alumni. Through virtual mentorship, we seek to empower advocates with the necessary skills, knowledge, and support to enhance their effectiveness in advocacy, organisational leadership, and engagement with stakeholders. https://openacademy.eurordis.org/mentoring-for-the-alumni/ Mentorship The Open Academy x ERDERA Mentoring Programme is back this year for Open Academy alumni! Running from December 2026 to May 2027, the programme matches participants with a mentor whose expertise aligns with the areas they want to develop, allowing them to explore their priorities in greater depth. Applications close on 3 October 2026.