5 % of the global population are suffering from a rare disorder
Equity for people living with a rare disorder means equitable access to diagnosis, treatments, care, social protection and opportunities
300 million people worldwide live with a rare disorder. That is equivalent to the population of the 3rd biggest country.
After two years of hard work, the CONECT project (Cardio-Ocular Network for Connective Tissue disorders) has come to the end of its funding.
It was important to meet to thing about the future of CONECT and the funding it requires, but also about common projects that may concern some of CONECT’s members. This is why we gathered together in Philadelphia 24th to 26th July.
Besides the pleasure to see us without any screen and sharing special moments, we had a whole day of work and reflection about future projects.
They are still in preparation, but I will certainly have the opportunity to let you know about them in future issues of CLI-News. It also was very important to exchange and see how our lives follow similar and parallel pathways.
These are extremely numerous so it is difficult to give all details here. Whether it was Conferences (G5 Health, ECRD, etc), or Annual Meetings (RDI, Eurordis, etc), or workgroups (ERN-Skin, Globalskin, FFP, Fimarad, etc) or even Webinars or trainings sessions(ANSM, AMR, etc), being able to attend on line is more economical, more ecological, less tiring, even though face-to-face meetings allow more richer exchanges.
And many others………………….
The most important event for rare skin disorders was held in Paris from 12th to 14th June.
The World Congress on Rare Skin Disorders (WCRSD) gathered together doctors, researchers,patients and industries.
The patient’s point of view was at the core of common interests with a plenary session organised by the patients which attracted over 150 participants.
The session gave a voice to patient representatives coming from South America, Africa, Nepal and the Philippines.
Two other sessions provided a large space for patients’ participation.
One was dedicated to Patient Education Programmes
and the other touched on the future and how to increase our togetherness to improve diagnosis and treatments.
These were three intense days full of exchanges, discussions and future projects for patients’ improved condition.
In Geneva,
taking the opportunity of the World Health Assembly,
on 29th May, two events were organised to bring the voice of rare and dermatologic disorders to the World Health Organisation (WHO).
Globalskin (IADPO) had choosen « Skin Diseases as a Global Public Health Priority – No Universal Health Coverage without Skin Health » as a subject to think about and work on.
Regarding Rare Diseass International (RDI), the importance of investment in rare disorders was at the heart of discussions with the final aim of The World Health Assembly drafting a resolution on rare diseases in 2025. A first step was made with RDI being admitted as an official partner of the WHO.
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)
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)
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)
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
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.
