The French Federation for skin is publishing its plea aiming to :
read the plea here ( in French)
1st prize in the 14-18 age range.
The drawing competititon “Story of my skin” organised by the René Touraine Fondation received high quality works
Orphanet has just edited its new study about rare disorders in France.
You can read here the whole study (in French)
On 25th February : Webinar : « The Power of the Patient Community in the Rare Diseases Movement » with a great presentation from Dr Ségolène Aymé, first CEO of Orphanet.
On 3rd March : Structuring the European Community for Skin Disorders inside Globalskin.
On 23rd February : The European Commissioner for Health and Food Security, the French and Czech Republic Ministers of Health and Members of the European Commission opened the RARE 2030 Conference, gathering almost 590 attendees together. After two year of continuous work, Eurordis and the European Community annouced the 8 recommendations arising from this work. The future of rare diseases over the next 10 years starts now, comprising :
On 23rd February 2021, celebrating 2021 Rare Disease Day, Eurordis held the “Rare 2030 Final Policy Conference”.
Over 1100 participants representing all stakeholders groups of the rare disease community took part in this event, learning, exchanging and celebrating together.
Find here the Rare 2030 Recommandations
Have a look at Rare 2030 website
Madalynn, Liam, Héloïse, Amelia, Brittany and her mother, Roxanne, Richelle and 4 members of her family, James and Charles, Ehran, Lisa, Emam are new members of the big Cutis Laxa family.
We are now 466 patients and their families, coming from all parts of the world. We are united and we get our voices heard. We support each other. And as the Rare Disease Day motto declares: « We are RARE, we are STRONG, we are PROUD
Rare Disease International (RDI) organised several events in the first half of 2021:
On 14th January , Webinar : Key Issues for a UN Resolution for Rare Diseases :
Inclusion and Human Rights, Appropriate Care, National Stategies, Rare Diseases in the UN System, Monitor Progress and Implementation.
On 4th February, Webinar : « World Health Organisation Collaborative Global Network for Rare Diseases » (WHO CGN4RD) :
Implementation of Universal Health Coverage from care to treatments; Expertise; Structured Activities under thematic « Programmes of care »; Exploit advancement in technology and innovation; Collaboration Plateforms ; Sharing networking expertise and global knowledge ; Research, clinical trials and registries.
On 25th and 26th May : RDI members meeting and Annual Report :
In 2020 RDI’s activities were equally internal, with webinars for its members and external with outreach to Permanent Missions to the UN in New York.
The aim is to promote Rare Diseases as a priority in International Policy and work towards a UN General Assembly Resolution for Rare Diseases with sustainable development goals.
During three days (14th, 15th and 16th January 2021) we took part in a Health Projects Contest to “Bring Innovation to Healthcare”.
The name of our Challenge was “Rare Disorders : How to reduce the diagnosis odyssey”
We presented an application called “Unknown but Recognized” and even if we finish last, it was the occasion to meet young computer scientists willing to developp a diagnosis application.
We are still working with them and sincerely hope that they will succeed.
A vaccination campaign against SARS-CoV-2 (COVID-19) infection has been organized at EU level in all European countries simuA vaccination campaign against SARS-CoV-2 (COVID-19) infection has been organized at EU level in all European countries simultaneously.
There is no reason for people with rare disease to avoid vaccination against SARS-CoV-2. Vaccination is important to protect the whole population as well as patients with rare skin diseases, although ultimately it remains the personal choice of each individual.
We particularly encourage vaccination for patients with disorders which may affect the immune system making complications of COVID-19. The currently available “mRNA vaccines” are dead vaccines and should not pose a risk to patients with immune deficiency and those undergoing immunosuppressive treatment.
Depending on the availability of other types of vaccines, in the future, new recommendations may be necessary.
Mendelian connective tissue disorders
There is no contraindication to vaccination against SARS-CoV-2 for patients with Monogenic connective tissue disorders.
Vaccination against COVID19 is important for the whole population including patients with connective tissue disorders. Although vaccination remains the patient’s choice, as it is the own choice for any citizen.
It could be strongly recommended for patients with connective tissue disorders, particularly for those with bad general condition, severe vascular and/or important lung involvement.
For detailed advice, don’t hesitate to contact the specialist who ensures your medical follow-up by email, fax or telephone.
©https://ern-skin.eu/vaccination-advices/