Sweden launches its first national strategy on Rare Disorders

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The National Council for Health and Well-Being (CNSB) identifies four priorities to elaborate the strategy : Building a project based on patient groups’ needs and reaching a consensus on aims and priorities ; relying on existing structures of care and taking into account the role of the different stakeholders ;  focusing on the clarification of roles and spreading knowledge ; remaining in the field of responsibility of health and medical care. A public consultation is ongoing.

(orphanews 2024.03.18)

Canada takes steps towards improving rare disease care.

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The network RareKids-CAN and the Canadian Network for Rare Disorders (RCMR) recently created by the Canadian government aim to improve quality and availability of healthcare and treatments available for Canadians living with a rare disorder. (orphanews 2024.03.18)

The growing role of patient groups in healthcare research.

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Patient groups contribute to research in three different ways :

  • In clinical trials and real world evidence : The groups offer a unique perspective and act as research subjects, advisors, reviewers, and even researchers. They can be involved at any stage of clinical trials from the pre-approval and design to making sure the research results reach their patient community.
  • In Health Technology Assessment (HTA) : This is a systematic process that evaluates technologies like medicines and medical devices. The assessment determines if they are clinically effective, cost effective or have any social/ethical impact. Patients and patient groups are increasingly involved in the process, providing insight into their condition and the impact of new technologies.
  • In Regulatory decisions : Patient groups are involved in regulatory processes offering real-world evidence for better medical regulation. In Europe, their views are crucial for transparent communication on medicines and valuable input into the review of information on medicines like package leaflets and safety communications.

Read the article published by Patientview in February 2024 (in English)

Understanding mothers’ experiences through narrative analysis

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A study was recently published in « Qualitative Health Research ». Even if this study was made for Prader Willy Syndrome, the results and recommendations that result can apply to any rare disorder. Researchers identified themes focusing on the complexity and rarity of the disorder, including the desire to be normal, how ordinary becomes extraordinary, isolation, behavior and normative standards, and alternative stories of mothering. Based on these results, four key recommendations could be established:

  • Recognition of the challenges of mothering a child with complexity;
  • Moving beyond functionality and impairment to participation and quality of life;
  • Considering anew how to tell the families stories and their need for support ;
  • Engaging with mothers to determine care priorities.

The findings of this study highlight how more qualitative research methods such as narrative analysis can be used in rare disease research to identify care and policy priorities to improve the lives of people living with a rare disease and their families.

(orphanews international 2024.02.13)

Survey ALL

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Carried out between January and April 2023, together with EMMA Society, this international survey evaluates the prevalence (number of cases among a defined population), impacts, behaviours and needs of different skins and skin disorders depending on geographical areas, countries or complexion.

It included 50,552 participants (adults ≥16 yo) in 20 countries (China, USA, Brazil, India, Australia, France, Italy, Canada, Denmark, Germany, Israel, Kenya, Mexico, Poland, Portugal, Senegal, South Africa, South Korea, Spain and United Arab Emirates) distributed across the 5 continents.

It is therefore the biggest private database in  dermo-cosmetics.

Take a look at all the results on this page : https://www.changer-de-regard.com/#all

 

KAPCODE Study

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Marie-Claude Boiteux took part in writing a new scientific publication : « Testimonies, feelings, complaints and emotional experiences of patients suffering from dermatosis on social medias : French Infodemiologic* Study of patients’ uncensored words ».

Steming from a work led by Pierre Fabre Dermo-Cosmetic & Personal Care together with the society Kap Code specialised in the analysis of real-life data in health who listened for 3 years to patients’ uncensored words as publicly expressed on social media.

The internet offers a forum to those for whom the skin disorder bridles their social relationships. Through social media, they share their real-life experience and reveal what they do not say – because they do not dare to or because of lack of time – in medical consultations: Self-image, physical and psychological impacts, therapeutic roving, etc.

Collected, analysed and related verbatims, this work shows the emergency and need to « change our gaze on visible disorders of the skin”.  https://www.changer-de-regard.com/#ecoute-reseaux

 

*Infodemiology was defined by Gunther Eysenbach in the early 2000s as information epidemiology.It is an area of science research focused on scanning the internet for user-contributed health-related content, with the ultimate goal of improving public health. It is also defined as the science of mitigating public health problems resulting from an infodemic.

 

VDS (Visible Disorders of the Skin) Program

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This program has been set up by the “Patient Relationship” Department of  Pierre Fabre Laboratories.

 

Living with a visible disorder of the skin on your face and/or hands, means been continuously under the gaze of others, embarrassment and reactions that are sometimes disconcerting and even hurtful from people just passing by or met daily.

The gaze, even covert, can have unsuspected impacts on the life of people living with a visible disorder of the skin.

Let’s become aware of the power of a gaze that, if it can damage the daily life, can also illuminate it!

Listen to the podcast with patients’ interviews and try the « e-motion experience », a unique moment « in the skin of a patient ».

Enjoy visiting its page, in French and/or English :  https://www.changer-de-regard.com/

Another booklet recently published

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This is for schools and communities to welcome a child with a skin disorder.

It lists the consequences the disorder may have, the specific needs, the possible or necessary layouts, as well as the role and place of the education team.

You can download it from Fimarad website (www.fimarad.org)

Skin Disability Guides

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After two years of collaborative work with patients, medical professionals, medico-social professionals and the National Office of Solidarity for Autonomy (CNSA), here is a concrete result of the work led by the FFP.

Because the skin is the biggest organ of our body and to understand the impacts of skin disorders, the Skin Disability Guides provide the urgent keys to evaluate the disabilities patients are facing.

The Patient Guide help them correctly fill the needed forms to assert their rights if it is possible in their country.

These documents are  downloadable hereunder (in French).

 

       

“What about talking…….about skin Disorders ? “

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What about talking … about skin disorders ? :

The French Federation for Skin (FFP) has just published a booklet for children (In French). Fruit of work with children with or without a skin disorder, with an adapted design made by the organisation « The Little Citizens », it perfectly answers the children’s questions about skin disorders and aims to get rid of bullying for those who suffer from those disorders.

You can download it here (in French)