Youtube with “Tibo InShape”

New video

Cécile was interviewed by #Tibo InShape on his youtube page.

A very serious, but joyful, moment that also allowed us to open an online funding page

 https://www.leetchi.com/c/cutis-laxa-international

 

UKRAINE

As war still goes on, Ukraine faces a humanitarian crisis and rare disease patients are the most affected by the conflict. 2 million Ukrainians have a rare disease and face the sizeable challenge of meeting the complex medical needs on their own.

The EU, Eurordis, ERNs, Orphanet and all the members of the European rare diseases sector joined forces and organized everything to give displaced Ukrainian patients the best help they could: list of medical centres abroad, safe transfer of patients across Europe, access to medicines and medical equipment in Ukraine despite the destruction of vital infrastructures, list of rare disease resources for refugees and displaced persons, and much more, see

https://www.standwithukraine.how/

Other Events in 2022

1st February: Pharmaceuticals Seminar

10th April : Our Little Stars” stall and entertainment

6th July : Pierre Fabre Contest, Marie-Claude Boiteux was a member of the Grand Jury that awarded the Price of the Best Patient-Centered project presented by the international chapters of the Pierre Fabre Group.

30th September and  1st October :  CHAM 2022 gathered together all stakeholders of tomorrow’s health : Politicians, Health Professionals, Institutional bodies, Pharma Industries and Patient Organisations.

Rare and I live with it

Cécile was interviewed by Handicap.fr for their new podcast

“Rare and I live with it”.

You can listen to it (in French):

on google

Or read the abstract:

here :

National Events in France in 2022

3rd February:

Workshop with the National Service for Solidarity and Autonomy and the French Federation for Skin on Support Files given to the Local Houses for Disabled People for patients to assert their rights.

 

8thFebruary :

Official hearing by the National Conference for Health on the occasion of the 20th anniversary of Democracy in Health. A lot still has to be done for small organisations such as ours to continue existing and working for improvements in patients’ quality of life.

 

9th February :

Associations member of FIMARAD (French Network for Rare Skin Disorders) worked on the concept of Expert by Expertise, where the Patient is rightly considered an Expert.

International Events in 2022

IADPO-GLOBALSKIN (International Alliance of Dermatology Patients Organisations)

27th January : Meeting of  Globalskin Europe

18th May :  Presentation of the first results of the international survey on the burden of dermatology disorders.

RDI, Rare Disease International :

28th February : International Rare Diseases Day

15th June : Annual General Meeting

European Events in 2022

ERN-Skin :

14thJanuary : Annual Meeting

10th March: Scientific Day

27th September : Webinar of the Thematic group concerned with Cutis Laxa

AMEQUIS :

18th January : last meeting to establish the criteria on which ERNs will be re-assessed and 15th June : final document.

 

EPAG :

21st January meeting of the Organising Committee and  31st January Good Practice webinar

 

ECRD :

27th to 30thJune European Conference on Rare Disorders

EURORDIS

18th May Annual General Meeting

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