European Disability Card
Members of the European Parliament approved the provisional agreement on the European Disability Card which aims to enhance mobility for people with disabilities across the European Union.
(orphanews 2024.05.23)
Scotland publishes first Genomic Medicine Strategy
The 2024-2029 plan intends to create a more coordinated genomic medicine service across the country to establish an equitable, person-centered and rights-based service.
(orphanews 2024.05.23)
In Belgium, the Federation RaDiOrg for rare disorders publishes propositions for a better future for people living with a rare disorder.
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
06th March 2024 Le Monde (French Newspaper)
Rare Disorders – the Challenge of Diagnosis
15th March 2024 Festival of Communication in Health :
Interview with Catherine Baissac, Patient relationship – Pierre Fabre Dermato-Cosmetics
28th April 2024 Charente Libre (French Newspaper) :
The « Brin d’Aillet » run in Sireuil (France) to the benefit of Cutis Laxa Internationale
NOT JUST MY SKIN
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
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.
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.
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 ……
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.
New Patients, News from Families
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.