Rare Disease Day 2013 - Find out what is happening in your country

Rare Disease Day 2013 - Find out what is happening in your country

RARE DISEASE DAY 2013

rarediseaseday.org Annual international awareness-raising campaign on rare diseases
Find events happening near you on the country pages! If there are not any listed contact us at rarediseaseday@eurordis.org

WHAT'S NEW AT EURORDISFind out our latest announcements
EURORDIS plans collaboration with the Foundation for the Development of Internal Medicine in Europe and welcomes their rare disease call for grants now open.
EVENTS
Grants for Research into Rare Diseases in Adults 2012


Check out the latest international rare disease eventsInternational Childhood Cancer Awareness Day, 20 February, Brussels, Belgium.
SIOPE.EU - Home

SIOP Europe

the European Society of Paediatric Oncology (SIOPE)

is a European organisation aimed at promoting optimal standards of care for children and young people with cancer. 

It is the only pan-European organisation dedicated to enhancing cancer awareness, diagnosis and treatment of children.

SIOPE:

• Supports and facilitates professional, medical, scientific and educational co-operation and training across Europe
• Integrates patients and parents and bridges the gap between family groups, professionals and policymakers
• Optimises access to information and promotes multi-centre and multinational clinical trials, forming a common platform for best practice guidelines in clinical research
• Promotes better policies for children with cancer and raises awareness of the numerous challenges faced by paediatric oncology professionals to EU policymakers
• Elevates standards for training and care in paediatric oncology and develops European guidelines

MEMBERS' CORNERCheck out the latest news and events from our members
The French Porphyria Association invites all members to attend the General Assembly on 2 February at the Plateforme Maladies Rares (Paris).
Association Française des Malades Atteints de Porphyries | AFMAP | porphyries-patients.org

Les porphyries ....

"Maladies obscures, aux noms compliqués,
envisagées uniquement en tout dernier recours "

Anthony McDonagh

Les porphyries sont des maladies génétiques rares, en général héréditaires. Elles sont la conséquence d'un déficit d'une des enzymes nécessaires à la synthèse de l'hème (cette substance que l'on retrouve notamment dans l'hémoglobine).

En fonction de l'enzyme qui fait défaut, on distingue sept voire huit formes de porphyries; elles sont réparties dans 2 groupes:

• Les porphyries hépatiques.

• Les porphyries érythropoïétiques.

Les symptômes comme l'intolérance solaire, l'hyper photosensibilité et la fragilité cutanée sont courants, mais pas seulement : manifestations neurologiques, douleurs abdominales sont aussi parmi les symptômes observés pour certaines porphyries.

Voir toutes les informations sur les porphyries