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After the 2020 edition in Houston (USA) and the 2022 edition in Glasgow (UK), this International Symposium dedicated to advances in research into the management of patients with congenital diaphragmatic hernia will be held in Lille, France, from 24 to 26 April 2024.

Sessions of the symposium will focus on management strategies, innovative therapies, basic sciences and humanities throughout the CDH patient journey.

The 2024 CDH Symposium aims to highlight and explore the multidisciplinary aspects of the clinical, personal and family management of this uncommon neonatal disease.

The programme will include expert-led sessions on the following cross-cutting themes:

  • Fetus with CDH
  • The diaphragm
  • The dysfunctional heart
  • The lungs
  • The brain
  • Nutrition and feeding
  • Non-isolated CDH
  • Helping parents and healthcare providers to cope with uncertainty

The International CDH Symposium will be held in-person and with virtual attendance options.

For more information, click here

 

The iCAN (International Children Advisory Network) 2022 Summit took place from July 11 to 15, 2022 in Lyon (France)!

iCAN is an international consortium of youth advisory groups involved in child health (care and research). Each year, about 100 young people from different groups, coming from Europe, the United States, Canada, Japan and Africa, meet to share their experiences around child health, to learn about care, research and innovation in pediatrics and to raise awareness among different health professionals in pediatrics about the importance of involving young people in their projects.

The 2022 edition of the Summit was organized by the KIDS France Chapter (Kids and families Impacting Disease through Science) on the theme "pediatric clinical research, therapeutic innovation and rare diseases". FIMATHO was pleased to participate!

The summit brought together over 183 attendees, including 80 youth members from over 23 countries and 4 continents, to help positively impact pediatric healthcare and clinical research. 

FIMATHO is currently working, in collaboration with the head of the KIDS France Chapter, on a research project entitled "Developing the involvement of young patients and their families in pediatric clinical research in the field of rare diseases (KIDS RARE)", this summit was the opportunity to present the project.

The International Congenital Diaphragmatic Hernia Symposium will be held from 27-29th April 2022 at the Technology and Innovation Centre, Strathclyde University, Glasgow UK.

CDH 2022 is the essential opportunity to hear the latest basic science and clinical research in congenital diaphragmatic hernia care. It's an hybrid event, with virtual attendance options available.

This symposium is for all international researchers, clinicians, patient and family organisations who are passionate about CDH research and clinical care.

The programme includes expert-led sessions and workshops covering:

  • Fetal assessment and interventions
  • Delivery room management
  • Postnatal, surgical and critical care in CDH
  • Family experience and priorities
  • Transition to adulthood and long-term CDH care

 More information on its website : www.cdh2022.com

 

On Thursday 30 September – Friday 1 October 2021 the 5th ERNICA network meeting took place at the Faculty of Medicine, Le Centre Hospitalier Universitaire de Lille (CHRU).

The first day of the meeting, begans with featured updates from the ERNICA coordination team on the continuation and expansion of ERNICA and current and future ERNICA activities.

Also, the chair of the ERNICA Scientific Committee presented the intention to develop an overall ERNICA research strategy 2022-2027, considering priority areas identified by disease-specific working groups. The research strategy will help to guide and shape the network’s future research activities.

Many interesting presentations followed in the morning (care databases and registers, clinical exchanges, place of genetics in rare inherited and congenital gastrointestinal anomalies ...).

During the afternoon, the several disease-group specific meetings took place (intestinal Failure, esophageal diseases, Hirshsprung's disease and malformations of the diaphragm).

The second day began with meetings focused on ERNICA standards of care. Then, took place an interactive session chaired by ERNICA coordinator on the topic of ERNICA 2022-2027. Ideas were shared and future activities were discussed, on topics including the CPMS, dissemination and use of social media, standards of care and their implementation and the integration of new ERNICA members in 2022.

The next annual meeting which will take place in Helsinki on 20-22 April 2022. Save the date!

 

CRDN's RAREsummit21 is a platform for change. It is the infrastructure that unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience, the journey towards better diagnosis, treatment and support for patients and their families is smoother and more certain.

On 7th October 2021, will be held virtually on 5th RAREsummit – a flagship CRDN event gathering over 300 great minds in rare diseases to make connections, exchange ideas and openly debate possibilities.

Through RAREsummit21, the aim is:

  • to raise awareness of rare conditions and their impact
  • to showcase exemplars of impactful patient group collaboration with other stakeholders
  • to bring all stakeholders in rare diseases together to drive patient group, researcher and industry partnering opportunities
  • to give stakeholders the knowledge and skills to ensure their practices involve patients and their advocates as essential partners
  • to improve the lives of rare disease patients, together, with greater efficiency, collaboration and success

More informations: https://www.camraredisease.org/raresummit21/

Agenda: https://www.camraredisease.org/raresummit21-agenda

Registration: https://www.eventbrite.co.uk/e/raresummit21-vibrant-vital-virtual-tickets-153801128315

 

At the beginning of the Covid-19 pandemic of early 2020, a group of concerned advocates came together to take Action for Rare Disease Empowerment (ARDEnt). The ARDEnt group’s aim was to shed light on the unseen impact of the pandemic on people living with rare conditions in order to protect the existing services for people living with rare conditions and lessons can be learned.

Following cross-sector stakeholder discussion, three priority themes were identified under which evidence would be collated. These have subsequently been included as three of the four priorities highlighted by the UK Rare Diseases Framework.

  • Priority 1: helping patients get a final diagnosis faster
  • Priority 2: coordination of care
  • Priority 3: improved access to specialist care, treatment and drugs

ARDEnt gathered information by a review of the published literature, grey literature review (including government documents, patient advocacy and public health documents) and interviews with key stakeholders, including patients, healthcare professionals, researchers, industry and advocacy groups. Although the focus of this review was the UK, the information search was not restricted to the UK.

This report reveals the impact of the pandemic on every stage of the patient journey, from diagnosis to eventual management. It catalogues the re-assignment of specialists away from rare disease, the fear of infection, the closure of clinics, the fracture of coordination of health and social care, and the delay or termination of clinical studies.
At the same time, the pandemic has accelerated the evolution of remote monitoring, the adoption of video calling and virtual appointments.

Finally, this report makes recommendations that should bring patients with rare disease into the light and make their management more robust for the future.

All the informations on the CRND website : HERE

 

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

L’Alliance Maladies Rares, which coordinates the rare disease day in France, brings together all rare disease stakeholders under the same banner from 6 February to 28 February 2021.

Members of rare diseases platform, volunteers, members associations, rare diseases networks...will disseminate and relay the campaign entitled "Let's make an alliance for rare diseases: #YESWENAME" on the social networks Facebook, Twitter, LinkedIn, Instagram and websites.

More information about rare disease day : https://www.rarediseaseday.org/

 

The European Reference Network on Rare Inherited and Congenital Anomalies (ERNICA) realized an animation video for parents and families about care and nutrition in Esophageal Atresia. To share!

RAREfest20 is a free, virtual and interactive festival featuring interactive science, technology, advocacy and arts exhibition linked with rare diseases. It’s organized by the Cambridge Rare Disease Network this November 28th.

RAREfest20 eventbrite email image 2

The purpose of RAREfest20 it's to spark curiosity, challenge perceptions, inspire innovation and collaboration and give a voice to rare disease patients and their families.

All day long, people will be access to exhibition stands, live demos, talks and panel discussions, rare art, films, scavenger hunt challenge and more.

The festival is open to the general public, patients, families, children, students, healthcare professionals, researchers, companies.

Tickets are free and available through this platform: registration

For more information visit the RAREfest20 website.