In Belgium, the Federation RaDiOrg for rare disorders publishes propositions for a better future for people living with a rare disorder.

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The current Belgian Plan for Rare Disorders was established in 2013. This is why RaDiOrg together with the workgroup of the Belgian College for Human Genetics and Rare Disorders sent these propositions to all political parties. They were positively welcomed. The Minister of Health described them as a marker for the future project of the National Plan for Rare Disorders.

(orphanews 2024.05.23)

IN THE MEDIA

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06th March 2024 Le Monde (French Newspaper)

Rare Disorders – the Challenge of Diagnosis

Read the article (In French)

 

15th March 2024 Festival of Communication in Health :

Interview with Catherine Baissac, Patient relationship – Pierre Fabre Dermato-Cosmetics

Read the article (In French)

 

28th April 2024 Charente Libre (French Newspaper) :

The « Brin d’Aillet » run in Sireuil (France) to the benefit of Cutis Laxa Internationale

Read the article (in French)

NOT JUST MY SKIN

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The World Skin Health Coalition (WSHC) ended its campaign « Not just my skin » on 19th April. It reached over 5 million people. Materials of the campaign were viewed over 17.8 million times. Over 6,800 people in 130 countries across 6 World Health Organisation regions signed the open letter urging health policy leaders to act.

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)

They left this world ……

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We have just heard, with great grief, about Abdulaziz’s passing.

Born in Yemen, he was able to emigrate to Canada with all his family.

He was 11.

May he Rest in Peace.

Welcome

New Patients, News from Families

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Aaxel, Javiel, Lylio, Yamani, Ovinga, Mina, Gisely, Thomaz and Alice have recently joined us.

We are now in contact with 540 patients and families. Their isolation and loneliness facing Cutis Laxa has disappeared.

Welcome to all of you.

We are glad you joined the Big Cutis Laxa Family.

ELASTICITY OF LIFE

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This is the title of the book recently published, in French and in English, by Dr Pascal SOMMER, Emeritus Research Director oat the French National Center for Scientific Research (CNRS).

He has been following Cutis Laxa and our association for more than 20 years.

The book is available online, printed or downloadable:

HERE

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)