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Nov 26, 2019 · The FDLQI is a questionnaire designed for adults (more than 16 years of age), family members or partners of patients (of any age) with any skin disease. The F-DLQI represents the sum of all scores (0–30); results can equally be expressed as percentages (0–100%).
- Charles Taieb, Smail Hadj-Rabia, Jacques Monnet, Mohammed Bennani, Christine Bodemer
- 10.1186/s13023-019-1234-y
- 2019
- Orphanet J Rare Dis. 2019; 14: 271.
Jacques MONNET. Activities registered with Orphanet: Head of patient organisation. Contact email: jacques.monnet@orange.fr. IPF - Incontinentia Pigmenti France Incontinentia Pigmenti France 1 Chemin de vide pot 69370 SAINT-DIDIER AU MONT D'OR FRANCE. Phone 1: 33 (0)6 07 35 86 55. Contact email: contact@incontinentia-pigmenti.fr.
- Registry and Biobank Work Group
- Wound Healing Work Group
- Prevalence Work Group Update
- Diagnostics Work Group Update
- Conference Proceedings Published
Work Group Members: Anil Vora (NFED BOD); Becky Abbott, MPH (NFED); Clayton Butcher, MD (NFED SAC); Christine Bodemer, MD, PhD (Necker Enfants Malades Hospital); Francesca Fusco, PhD (Institute of Genetics and Biophysics); Kayla Hollenkamp (NFED Work Group Assistant); Jacques Monnet, MBA (IP – France); Maranke Koster, PhD (NFED SAC); Mary Fete, MSN...
Work Group Members: Becky Abbott, MPH (NFED); Daniel Aberdam, PhD (INSERM); Brad Amendt, PhD (University of Iowa); Mary Fete, MSN, RN, CCM (NFED); Tim Fete, MD, MPH (NFED SAC); Encarna Guillen-Navarro, MD, PhD (Virgen de la Arrixaca University Hospital); Smail Hadj Rabia, PhD (INSERM); Kayla Hollenkamp (NFED Work Group Assistant); Maranke Koster, P...
Work Group Members: Becky Abbott, MPH (NFED); Brad Amendt, PhD (University of Iowa); Clayton Butcher, MD (NFED SAC); Maria Carmen-Martinez-Romero, PhD (Virgen de la Arrixaca University Hospital); Angus Clarke, DM, FRCP, FRCPCH (Cardiff University); Mary Fete, MSN, RN, CCM (NFED); Tim Fete, MD, MPH (NFED SAC); Francesca Fusco, PhD (Institute of Gene...
Work Group Members: Becky Abbott, MPH (NFED); Brad Amendt, PhD (University of Iowa); Clayton Butcher, MD (NFED SAC); Maria Carmen-Martinez-Romero, PhD (Virgen de la Arrixaca University Hospital); Angus Clarke, DM, FRCP, FRCPCH (Cardiff University); Mary Fete, MSN, RN, CCM (NFED); Tim Fete, MD, MPH (NFED SAC); Francesca Fusco, PhD (Institute of Gene...
In December 2022, the American Journal of Medical Genetics published a conference summary of our work during 2021’s International Ectodermal Dysplasias Research Conference. Read the article, “Rare Diseases of the Ectoderm: Translating Discovery to Therapy,”to learn more.
Jacques MONNET More information. Email: jacques.monnet@orange.fr. Phone 1: 33 (0)6 07 35 86 55 Contact person of patient organisation Christel MONNET ...
Jul 23, 2020 · Characteristics and outcomes of asthmatic patients with COVID-19 pneumonia who require hospitalization Antoine Beurnier, MD1,2,3, Etienne-Marie Jutant, MD1,2,4, Mitja Jevnikar, MD1,2,4, Athénaïs
- Antoine Beurnier, Antoine Beurnier, Etienne-Marie Jutant, Etienne-Marie Jutant, Mitja Jevnikar, Mitj...
- 2020
Sep 9, 2021 · RESULTS. Although the typified never smoking (57%), mucinous adenocarcinoma (57%), and nonmetastatic (71%) phenotype predominated in 110 patients with NRG1 fusion–positive lung cancer, further diversity, including in smoking history (43%) and histology (43% nonmucinous and 6% nonadenocarcinoma), was elucidated.
Nov 4, 2021 · In conclusion, persistent respiratory symptoms, especially new-onset dyspnoea and cough, are not rare 4 months after hospitalization for COVID-19. New-onset dyspnoea was rarely. associated with severe fibrotic lesions, and the association between new-onset dyspnoea, fibrotic lesions and low DLCO was rare.