UNITED NATIONS AND INTERNATIONAL NEWS

16th December2021 The United Nations General Assembly voted the First Reloution for People Living With a Rare Disorder

After a first adoption by consensus in November, the final text became an official United Nations Resolution with the vote during the General Assembly on 16th December.

Rare Disease International, together with Eurordis and the Non Governemental Organisations (NGO) Committee for Rare Disorders advocated relentlessly with United Nations members to elaborate the resolution “Addressing the Challenges of Persons Living with a Rare Disorder and their Families”. This hard work  has now been rewarded.

 

and elsewhere

Australia :  Government is funding the « RArEST » initiative for 3 years with an amount of $ (AUD)  1.9 million. This initiative is led by Universities and the Federation « Rare Voices Australia », to improve Education, Support and Training courses for Rare Diseases . (©Orphanews 16th  November 2021)

The UN calls on France to completely change its idea of disability. They especially tackle  too « medical » approach and « systematic » institutionalisation. (© Hospimédia)

Ratification of the African Medicines Agency (AMA) Treaty. One of its priorities will be to act against sub-standard and fake medicines.

And also, the First African Summit on Rare Diseases was held in Accra (Ghana) on 1-3 December. The main theme was to engage in a dialogue between all stakeholders in the national and regional rare disease eco-system in Africa. (©Orphanews 2nd December 2021)

In the USA : Establishment of 31 Centres of Excellence for Rare Disorders. They will cover several specialties and provide rare disease patient education, training courses for physicians, and will contribute to enhanced research on rare disorders by promoting collaboration in this field. (©Orphanews 02 Décembre 2021)

In Italy : Adoption of a National Law for Rare Diseases. This law provides a definition of rare diseases as one with a prevalence of less than five patients per 10 thousand. This definition fits in with the one used at the European level. The law also provides for the establishment of a National Committee for Rare Diseases within the Ministry of Health. (©Orphanews 2nd December 2021)

AND ALSO …. IN 2021

29th September 2021

Webinar on e-Health with the French Skin Federation

 

 

1st October  2021

Bersot Estate Agency gave us a € 300 chéque. They had proposed to their clients to make a donation to the organisation they had chosen for each transaction. A huge thank you to them.

 

 

14th October 2021

Webinar : Integration of ERNs in National Health Systems – Care Pathways

 

 

 

26th – 27th October 2021

AMEQUIS workshop. The global aim was to simplify and improve the revalidation steps for ERNs when applying for reassessment.

 

 

 

FRENCH FEDERATION FOR SKIN – CONFERENCE AND ANNUAL MEETING

30th November 2021

The 3rd Conference of the French Federation for Skin (FFP) was opened by Mr Olivier Véran, French Minister of Health and Solidarity.

Watch his message here (in French) : https://www.youtube.com/watch?v=Bvm0lmixr7E

Convinced that democracy is necessary in health issues, he recognised the quality of the FFP advocacy and the real obstacle course its 21 member organisations can face.

  

FFP represents more than 20 million patients. this third  conference was an  undeniable success in bringing together high quality speakers : health Professionnals and Institutions.

 

The work of the FFP is recognised by all stakeholders in the field of dermatology.

 

After the Conference, the Annual General Meeting was held and the annual report brought to light the many achievements in 2021. The FFP member organisations elected the new board of Directors and its new Chair : Marie-Claude Boiteux

 

GLOBALSKIN ANNUAL MEETING

29th September 2021 :  Globalskin Annual Meeting.

The International Alliance of Dermatology Patients’ Organisations (IADPO), known as Globalskin, was set up in Canada.

It has grown a lot

 

 

 

 

 

 

and allows to share efforts worldwide for patients’ improved quality of life

.  

The French Federation for SKIN (FFP) is working hard

Since the beginning of the year, Georges Martinho, FFP General Delegate, led several projects at the double all showing positive and very promissing results :

  • The FFP plea was published in March. It gathers together the difficulties, needs and proposals of thousands of persons suffering from skin diseases in France, wether these diseases are rare or not. Delivered to all Health Authorities and elected Representatives acrossthe country, its aims are : long-term improvment of quality of life for skin patients ; advocacy against social and local inequalities ; improved support of care journeys ; getting patients’ expertise recognised. The first reactions are very positive.

 

  • National Office of Solidarity for Autonomy (CNSA) and Local Houses for Disabled People (MDPH) working towards the recognition of a « Skin Disability » and adapting the administrative steps to the reality and specificities of dermatologic diseases.
  • Rallying Members of Parliament : After sending the petition, several meetings have taken place with Members of Parliament and Senators. The working areas fo the Members of Parliament and the FFP include meeting patients to increas knowledge of their needs, bringing the issues to the parliamentary debate and proposing amendments to legislation.
  • Taking par in the inter-associative task-force of pharmaceutical industries : Following the recommendations published by the European Commission on how to improve the information on health products, a survey and a meeting allowed members of the FFP to share their point of view and take part in this work.
  • Educational aids for children and teenagers : These aids have an informative and educational aim illustrated by concrete situations. We will soon start working with illustrators, various tools have been mentioned (books, videos,etc). The first two aids, for 6-11 year olds and 12-18 year olds, are taking shape and should be edited by the end of this year.

 

The FFP is doing great and has real concrete results.

workgroups, training and information for Patient Representatives (ePAGS

On 18th March

« Good Practice : How to measure results, What is Quality of Life, How to build up a survey, …»

On 9th June 

ePAGS Steering Committee meeting

The first half of the year was quite busy with Eurordis

On 12th May : Annual Members meeting

on 10th June : Annual General Meeting

Setting up RDI (Rare Diseases International), editing surveys on a regular basis (Rare Barometer), helping patient representatives in the European Reference Networks (ePags), European Conference on Rare Diseases (ECRD), advocating at the European (EC) and international (UN, WHO) levels, etc…

The actions led by Eurordis have changed, change and will continue to change the quality of life and care for people living with a rare disease in Europe and worldwide.

There is no lack of work.

Cutis Laxa Videos ……… N°8 ……. last one

Here is the 8th …..and last…..of our videos

“Advice and support : “we are here !”” …  this is my conclusion

and also how we, parents, can help our “different” children.

I hope you enjoyed those videos.

you can find the 8 videos on the playlist :

 

and don’t forget you can have subtittles in your own language

Cutis Laxa Videos …. N°6

Let’s watch the 6th episode of our videos about Cutis Laxa.

Today :  the difficulties with the administration (in France but maybe same issues in other countries) and how CL patients must sometimes struggle to get their rights respected.

 and don’t forget you can get subtittles in your own language:

 

Cutis Laxa Videos …… N°5

Today’s topic is our organisation “Cutis Laxa Internationale” celebrating its 20th anniversary on 11th November 2021

 

and how many CL patients are there worldwide as of today (April 2021)

Remember you can get subtittles in your own language