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EwenLife stories

Sandrine - Rett syndrome - Belgium - I become a therapist for my daughter (2020) (EN)

Magali - Phenylketonuria - Why do I testify? (2019) (FR)

Laure - These miscarriages were the hydatid mole - ep1 - France 2021

Family Mediterranean Fever - It is not appendicitis(Ep1)(FR 2020)

Aurelie - France - To understand Hypermobile Ehler Danlos symptoms (EN ST 2020)

Marie Anne - France - Blepharospasm - This is not myopia (ep1) (EN ST 2020)

Julia - France - Gitelman Syndrome - A long diagnosis (ep1) (EN ST 2020)

Emeline - France - Gitelman syndrome - "I eat: it’s not anorexia but Gitelman" (ep1) (FR 2020)

Sabrina and Sylvain - France - KCNQ2 - Guilt and Rare Disease - Gross Testimony (ep1) (FR 2020)

Melanie - LPAC Syndrome - For others to save time (Ep1) (FR 2020)

Carla - Canada - Granulomatous mastitis in my daily life (EN 2020)

Isabelle - France - Mediterranean fever- the pink color against pain (FR 2020) (FR 2020)

Sandrine- Rett Syndrome - She’s my daughter before a disease (2019) (FR)

Florence - France - When Bainbridge Ropers symptom popped up into my life (ep1) (FR 2020)

Djamila and Stephane - Our son is now 20 years old - ep1 - CFC Syndrome - France 2021

🍎Nicolas - The atypical Rett syndrome of my daughter - ep1 - France 2021

Marie-Claude - The impact of pathology in adulthood - ep4 - Cutis Laxa - France 2021

Catherine and Laurence - The appearance of symptoms in adulthood - ep1-Meige-France Syndrome 2021

Anaelle - France - Primary immune deficiency - immune deficiency in my childhood (Ep1) (FR 2020)

🍎Magali - Glucose is not transported - ep1 - GLUT1 deficiency syndrome- France 2021

Aude - United Kingdom - Quest for diagnosis & MBL deficiency (EN 2020)

Saliha - Rendu Osler - France - Talking to city doctors about the disease (ep1) (FR 2020)

Gwendoline - France - Adrenal insufficiency - Coping with isolation (2020) (FR°

Lyse - France - Nemo syndrome - Becoming a caregiver changes everything (2020) (FR)

Aurore - Amniotic Bands - Why do I testify? (2019) (FR)

🍎Isabelle - The syndrome and its characteristics - ep1 - Kleefstra syndrome - France 2021

Bronwen - United Kingdom - My Life with amniotic band syndrome (EN)(FR)(2020)

Amélie Géraldine and Blaise - The pearl necklace ep1 Phenylketonuria France 2021

Aude - United Kingdom - Errance et déficit en MBL - diagnosis wandering and MBL deficit (ep1) (FR 2020)

🍎 Nathalie and Julien - CHARGE syndrome: an acronym - ep1 - CHARGE syndrome - France 2021

🍎Christine - After a diagnosis, the Internet should be consulted with caution - Tetrasomia X - ep1 - Switzerland 2021

Claire - France - Turner’s syndrome - When Turner arrived in our lives (2020) (FR)

Anne - France- 10q26 deletion - Living with my daughter’s energy (ep1) (FR 2020)

Virginia - France- Bartter syndrome - my daily life with invisible disability (EN 2020)

Sandrine -Rett syndrome- Going abroad for the care of my daughter - Part 1 (FR 2020)

Laetitia - I explain my disease - Ep1 - Sickle cell anemia - France 2021

Danielle - France - Kcnq2- learn sign language to a non-verbal child - tips

Aurélie - More than coffee milk tasks - ep1 - Neurofibromatosis type 1 - France 2021

Michelle and Nicolas - France - panhypopituitarism and its treatment (2020) (FR)

Chantal - France - Osteogenesis imperfecta - Must fight, not the choice (ep1) (FR 2020)

Rose - Ivory Coast - GNE Myoapathy - Having a rare disease in Africa (2020) (FR)

School and job

Sick leave and half-time work: how does it work? (FR 2019)

Prolonged Work Stoppage - Devices to Prevent Occupational De-certification (FR 2019)

Talk about your invisible disability or not?

How to obtain a disability pension ? -France only (FR 2015)

Apprenticeship and disability : is it possible ? - France only (FR 2020)

What is a Professional Rehabilitation Centre(FR 2019)

Local mission - 2017 Collection -employment and me - disability(FR 2017)

Consequences of autoimmune/auto-inflammatory disease on my job (FR 2017)

MDPH file : life project and medical certificate (FR 2017)

Handi'U programs at University, France only (FR 2011)

temporary disability allowances in public service- France only? (FR 2017)

Disability Services SAVS and SAMSAH 2019 - France only (FR 2019)

Emeline -France - Gitelman syndrom - how to succeed your studies with an invisible disability (ep3) (FR 2020)

Disabled worker : RQTH - France only (FR 2017)

Invisible disability - internal awareness campaign Bouygues Immobilier (FR 2018)

How to benefit from a pension for incapacity for work? France only (FR 2018)

Cap emploi - employment agencies for disabled people - France only (FR 2017)

Your child has a rare disease or disability and goes to school

Information on the catalogue of interventions of FIPHFPs - for disabled workers in the public service (FR 2017)

Employment– Agefiph : help to disabled people in private companies - France only (FR 2017)

Schooling with a rare disease

Education allowance for disabled children - France only (FR 2017)

SAMETH employment of disabled people (FR 2019)

How can I adapt my professional activity?

What facilities for my child in school, France only(FR 2020)

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