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.


 

 

The FIMATHO health network is pleased to announce the launch of the English version of its website!

Almost all the website has been translated in order to make its content accessible for all rare diseases stakeholders across the world.

This new website version is available via the “flag” button located on the header banner or from the URL: https://www.fimatho.fr/en/


Have a nice visit on our website, in French or in English!