6th CUTIS LAXA DAYS

SAVE THE DATES

The 6th Cutis Laxa  Days will be held at the University Hospital of Ghent( Belgium)

on 14th, 15th and 16th September 2022

 

WHAT IS AN ERN (European Reference Network) ? (Videos)

Set up 3 years ago by the European Commission, they aim to help patients with rare disorders receive a right diagnosis and follow-up, gather together all European experts and Patients Organisations to allow patients to get the best care.

The European Commission, Patients and ERN Coordinators give their point of view

European Commission (in almost all European Languages)

https://audiovisual.ec.europa.eu/en/video/I-193046

Patients (in English and/or with English subtitles)

https://audiovisual.ec.europa.eu/en/video/I-191813

ERN Coordinators (in English and/or with English subtitles)

https://audiovisual.ec.europa.eu/en/video/I-191812

Patients’ and associations’ role is poorly recognised

The COVID crisis reveals how patients’ and associations’ role is poorly recognised (Newspaper Le Monde 2020.07.06)

In this newspaper article, three members of the French association Renaloo (kidney failure) make an unanimous  statement : Associations of Health Users were forgotten in the heart of the sanitary crisis :

  • There were no official recommendations for « at risk » people.
  • Associations had to establish themselves « Recommendations for patients » based on international recommendations or those from other countries. ;
  • Nothing was set up to allow « at risk » people to stop working as soon as the crisis started ;
  • Cooperation with patients and their associations was considered incidental and with no priority ;
  • Despite the collective stakes we all had to face, democracy in health suffered a lot ;
  • Never quoted as being part of the various parties committed to protect vulnerable people, nevertheless patient associations were working on all fronts during this period ;
  • In France, except a few cases, patients associations have not yet reached the place they deserve in the medical world;
  • Government communication about vulnerable people focuses only on older aged people and forgets young and active people who are fragile too.

 

Nothing should be done without Us !

RARE DISEASES INTERNATIONAL (RDI) ANNUAL GLOBAL MEETING

Rare Disease International (RDI) Annual Meeting and Conference, was held on 19th May, online as many others. Here are some screenshots of that important event we attended online from CLI’s home/office.

RDI and WHO : Universal Health Coverage and Rare Diseases

ORPHACODES : Universal name for each disease

RDI Action Plan 2020-2021

Rare Disease Patients and Covid-19

THE PATIENT JOURNEY

THE PATIENT JOURNEY

(European Journal of Human Genetics : “ Patient Journeys” : improving care by patient involvement https://www.nature.com/articles/s41431-019-0555-6)

Rare Skin Disorders are gathered together in the European Reference Network-Skin. Those disorders have multiple common points: late diagnosis, none or few treatments, difficulties facing other people’s gaze, etc. The burden those difficulties represent is not always known by healthcare professionals. The Patient Journey is too often an Assault Course.

In order to help healthcare professionals better understand that burden, better manage it and thus give patients a better quality of life, patients must, themselves, evaluate their journey and make it known.

This is why patient representatives in all ERNs will circulate an evaluation grid to all patients.  This « Patient Journey » grid gathers together the different stages that are inherent to each disease. Then each stage is described in 3 levels : Clinical presentation, challenges and needs identified by the patient, goals to improve care. The grids are then reviewed by both patients and professional experts.

Finally, this grid of the “Patient Journey” will allow patients to discuss their individual needs with only one aim : to improve care and quality of life. The “Patient Journey” will also be an important element in sharing knowledge from both patient’s and healthcare professional’s points of view.

WHO (World Health Organisation) signs a memorandum of understanding with Rare Disease International (RDI).

WHO (World Health Organisation) signs a memorandum of understanding with Rare Disease International (RDI).

According to this memorandum, the activities carried out as part of this agreement to collaborate will include goals and actions timed around WHO 13th Programme of Work that runs until 2023.

In the first year, they will focus on harmonising the way rare diseases are defined internationally and on laying the ground for the development of a global network of centres of excellence for rare diseases

(© RDI newsletter 2019.12.19)

Rare Diseases are included in Universal Health Coverage (UHC)

At last Rare Diseases are included in the United Nations political declaration on Universal Health Coverage (UHC)

On 23rd September, two years of active advocacy by Eurordis and Rare Disease International were crowned with succes as the 193 member states of the United Nations adopted a historical political declaration on UHC including rare diseases.

The principles of UHC state that all individuals and all communities must have access to the health services they need without any financial hardship.

(©eurordis newsletter 2019.12.11)

Report on “Disability and rare disease: towards person centered care for Australians with rare diseases”

AUSTRALIA : Report on “Disability and rare disease: towards person centered care for Australians with rare diseases”

The recommendations of this report, commissioned by Rare Voices Australia, on behalf of partner organisations and people living with rare disease, were launched at the Parliament.

They are focused on reforms which would deliver integrated care for those with health and disability care needs, improve the understanding of rare diseases by health and disability care workers and ensure that the systems can respond to the changing needs of people with rare diseases that are complex and sometimes difficult to predict.

(© orphanews 2019.12.06)

FRENCH FEDERATION FOR SKIN

03rd  December  First Conference on Skin and Annual Meeting of the French Federation of Skin during the Dermatology Days of Paris.

 

The presentation of Pr Andrew Y Finlay from Cardiff  University highlighted the questionnaire on Quality of Life for patients with skin disorders, may they be rare or not.

This questionnaire should be proposed to patients by all dermatologists.

After this Patient Organisations took stock of their activities and difficulties.

LEADERSHIP SCHOOL IN BARCELONA

26 – 27th November  Leadership School organised by Eurordis.

After several online  courses throughout the year, patient representatives in the ERNs met in Barcelone for the last two training days in Leadership.

We will be issued with a Diploma at the end of the course.

Even if the Catalan setting tasted like summer vacation, it was two days of real and hard work during which we increased our natural capacities and skills to become more efficient when interacting with health professionals in the ERNs.

 

 

The aim of this Leadership school has been reached as we gained the competences required to improve the way we bring patients’ voice forward where it matters most.