FRENCH FEDERATION FOR SKIN

03rd  December  First Conference on Skin and Annual Meeting of the French Federation of Skin during the Dermatology Days of Paris.

 

The presentation of Pr Andrew Y Finlay from Cardiff  University highlighted the questionnaire on Quality of Life for patients with skin disorders, may they be rare or not.

This questionnaire should be proposed to patients by all dermatologists.

After this Patient Organisations took stock of their activities and difficulties.

LEADERSHIP SCHOOL IN BARCELONA

26 – 27th November  Leadership School organised by Eurordis.

After several online  courses throughout the year, patient representatives in the ERNs met in Barcelone for the last two training days in Leadership.

We will be issued with a Diploma at the end of the course.

Even if the Catalan setting tasted like summer vacation, it was two days of real and hard work during which we increased our natural capacities and skills to become more efficient when interacting with health professionals in the ERNs.

 

 

The aim of this Leadership school has been reached as we gained the competences required to improve the way we bring patients’ voice forward where it matters most.

 

World population affected by a Rare Disease

New evaluation of the world population affected by a Rare Disease :

In an article published by Orphanet, Orphanet Ireland and Eurordis, the prevalence of rare diseases is of 3,5 to 5,9 % of the worldwide population.

Rare cancers, infectious diseases and poisoning are excluded from this prevalence.

Thus there is an approximate average number of people affected by a rare disease of 300 million worldwide.

(©orphanews 2019.10.08)

ERN-Skin Board Meeting 2019

ERN-Skin Board Meeting in Necker Hospital in Paris.

Two days of intense work, whether in plenary session or in thematic groups.

 

Patient representatives could express their wishes and dialogue with doctors and researchers to establish together the roadmap for the coming years.

There is a huge amount of work to do but our will and synergy will allow diagnosis, care and treatment for patients to improve at the European Union level

 

CHINESE ADVANCES

CHINA 

An article published in Bioscience Trends acknowledges the great recent advances in the area of the needs of patients affected by rare diseases, but also highlights the recurrent difficulty in diagnosis and misclassifications.

As a whole they emphasise the need for a more comprehensive and complete healthcare and social care system and advise the implementation of regional plans.

(© orphanews 2019.09.18)

Helplines for Rare Disorders worldwide

Helplines for rare disorders worldwide
Country Organisation      Helpline & other modes of contact
Canada Rare Disease Information and Resource Centre +385 12441393  –  info@rqmo.org
www.rqmo.org/rare-disease-information-and-resource-centre/
Croatia   * Croatian Help Line for Rare Diseases +385 12441393  –  rijetke.bolesti@gmail.com
www.rijetke-bolesti.hr/rare-diseases-croatia
Facebook group
Denmark * Rare Diseases Denmark +45 33140010  –  helpline@sjaeldnediagnoser.dk
sjaeldnediagnoser.dk/helpline/
France * Maladies Rares Info Services (MRIS) + 33 156538136  –  info-services@maladiesrares.org
www.maladiesraresinfo.org
Germany ACHSE Betroffenen- und Angehörigenberatung +49 3033007080  –  www.achse-online.de
Hungary * Lifebelt +36 617904533  –  mentoov@rirosz.hu  –  mentoov.rirosz.hu/
Ireland * National Rare Diseases Office (NRDO) +353 1800 24 03 65 or + 353 18545065
rare.diseases@mater.ie  –  www.hse.ie/eng/services
Italy * Università di Padova, Coordinating Centre for Rare Diseases, Veneto Region + 39 049 82 15 700  –  malattierare@pediatria.unipd.it
Italy * Telefono Verde Malattie Rare +39 800896949  – https://www.iss.it/?p=171
Italy * Centro di ascolto malattie rare +39 800 880101  –  http://www.regione.toscana.it/-/centro-di-ascolto-per-le-malattie-rare
Italy * Centro di ascolto per le malattie rare del Piemonte e della Valle d’Aosta +39346.1059486  +39339.5203554 –  segreteria@a-rare.it
Mexico AcceSalud accesalud@femexer.org
Norway Norwegian National Advisory Unit on Rare Disorders Oslo University Hospital +47 23 02 69 75  –  liegen@ous-hf.no
Helsenorge.no/Sjeldnediagnoser
Portugal * Linha Rara +351 300505700  –  info@rarissimas.pt
Romania * Romanian National Alliance for Rare Disease (NoRo Help Line) +40 260611214  –  office@apwromania.ro
Romania * Romanian Myasthenia Gravis Info Centre +40 744704399  –  asociatia.miastenia@gmail.com
Serbia * NORBS +381 800333103  –  office@norbs.rs  – www.norbs.rs/
Spain * SIO Feder +34 918221725  –  sio@enfermedades-raras.org
Switzerland * Infos Maladies Rares +41 848314372  –  contact@infomaladiesrares.ch
www.info-maladies-rares.ch/
Switzerland * Seltene Krankheiten +41 442663535  –  selten@kispi.uzh.ch  –  www.kispi.uzh.ch
USA GARD Genetic and Rare Diseases Information Center +1 8882052311
Wolrdwide ThinkGenetic https://www.thinkgenetic.com/

medical advice from Genetic counselors :  https://www.thinkgenetic.com/contact-counselor

28th February 2019 : Rare Disease Day

Show your Rare, Show you care

28th February will be the International Rare Disease Day.

The 2019 theme will be “Bridging health and social care”. This special day will focus on bridging the gap between medical, social and support services in order to tackle the challenges encountered by people living with rare diseases and their families.

Paris Dermatological Days (JDP)

13th December 2018 in Paris, we ended the year on a high note, with Paris Dermatological Days (JDP).

It was a great opportunity for the French Federation for Skin to go back to work with a new Board of Directors,

new Committee

and new projects that are common to all dermatological diseases.

A great energy to lead us and carry patients’ voice high and strong.

UN Special Rapporteur calls for support for Rare Disease community

UN Special Rapporteur calls for support for Rare Disease community in report to UN General Assembly

Catalina Devandas, UN Special Rapporteur for the Rights of Persons with Disabilities, presented her report to the UN General Assembly. In particular, it states that the lack of accurate diagnosis and effective treatments for the majority of rare diseases is a global challenge. It calls on states to develop and implement policies and practices that target the most marginalised groups of people with disabilities (for example, people with multiple or severe disabilities and rare diseases) in order to improve equity in term of access to care.

(© Orphanews 2018.12.04)

Cross-border care : 10 patient errors

European Commission publishes 10 patient errors in cross-border care

This follows the European Commission’s recent report on cross-border care, which showed that there is still room for improvement in patient awareness of the existence of cross-border care and especially of national contact points. This top 10 includes:

  1. Not being informed on their rights to treatment abroad under EU law
  2. Not planning their trip thoroughly
  3. Leaving without prior authorisation
  4. Not being informed on the financial implications
  5. Traveling without first contacting the National Contact Point
  6. Traveling without the transfer of medical records
  7. Not taking possible language barriers into consideration
  8. Not arranging suitable medical follow-up
  9. Not presenting the required documentation needed to obtain reimbursement
  10. Not being informed on where and how to file a complaint

(© Orphanews 2018.12.04)