Exchange groups reserved for families
Associative and medical institutions in the field of rare diseases
Devices and tools for disabled people and carers
Reserved exchange groups
International group of exchanges between families
International Facebook group run by families, accessible only to families with a member affected by the syndrome: Chromosome2p25/ MYT1L Family Page
There is a DEEPL translation tool that can help you with exchanges.
Francophone group of exchanges between families
Facebook group mainly French (continent, DROM / COM) and French-speaking countries managed by families, accessible only to families with a member affected by the syndrome: La Bulle des Extra-Vaillants MYT1L
Associative and medical institutions
in the field of rare diseases
Rare Disease Alliance, Rare Disease Info Service, Orphanet
Rare Diseases Info Service and theRare Disease Forum: your resource site if you are sick people, relatives or professionals to INFORM, GUIDE and SUPPORT you
TOLL FREE 0 800 40 40 43
"Legitimate spokesperson for the 3 million French people affected by rare diseases, it enlightens and challenges the public, health professional and institutional spheres. Its associative expertise has a direct impact on public health policies and promotes the advancement of clinical and scientific research." extract from the site
"The objective of Orphanet is to provide high quality information on rare diseases and to allow the same access to knowledge for all stakeholders...
Orphanet was created in France by INSERM (National Institute of Health and Medical Research) in 1997... Orphanet has gradually transformed into a Consortium of 40 countries, spread across Europe and around the world." excerpt from the site
UPDATE Dec 2022, THE ORPHANET NOTEBOOKS. A GOLD MINE! IThis is a complete guide to understand the environments in which you operate, to ensure your rights, and to guide you in your steps...
National Plan for Rare Diseases, Health sectors
National Plan for Rare Diseases 2025 (3rd)
A health sector: AndDi – Rare
The AndDI-Rares sector is the national rare diseases health sector dedicated to diseases with anomaly of somatic and cognitive development. It brings together all the French actors involved in the diagnosis, monitoring, management, research and training of these diseases.
The health sector AnDDI-Rares has created "Pr Folk's blog - living with a rare genetic disease" in order to disseminate quality information intended mainly for patients and families who come for consultation in the various national sites.
The editorial line is mainly focused on developmental anomalies with or without intellectual impairment from rare causes. The articles published are intended to accompany you in your steps, both medically and to guide you on a daily basis by giving you practical information. Thanks to this blog you will have access to a lot of information concerning genetics, research, rare diseases…
Reference and Reference Centers skills
You will find in the link of the Anddi-Rares sector below the list of Reference and Competence Centers as well as the name and telephone number of the contact physician.
A reference center with practitioners involved in diagnosis and treatment of the syndrome: Rouen University Hospital
Dr AM Guerrot, Dr J. Coursimault and Dr F. Lecoquierre accompany us.
Article : Clinical and molecular study carried out by the Rouen team whose
results are published in the journal Human Genetics in November 2021
Dispositifs et outils au service de la people with disabilities and carers
My Disability Course is ainformation, orientation and service platformfor people with disabilities and their caregivers designed, on behalf of the State and in close collaboration, by Caisse des Dépôts and the National Solidarity Fund for Autonomy (Cnsa) . -> Explanatory video
The IMIND centerprovides the key elements and the update on the national strategy around autism in TND (neurodevelopmental disorders). 3-year assessment, vast and very interesting.
Accessible thanks to the implementation of FALC (Easy To Read and Understand).
It is a network at the service of people with rare disabilities, their entourage and the professionals who support them.
It is made up of 4 specialized centers (eg: a center for severe epilepsy, for severe language disorders). It is led by 12 Rare Handicaps Relay Teams throughout the territory who intervene at all ages of life, free of charge and without MDPH notification. He also collaborates with many associations.
On the platform "Enter inDisabled people Rare" from the GNDHR, you will find resources, trainings, testimonials.
The relay teams also schedule free training for families. For example, theERHR North West, offertrainingwith cost of meals to facilitate access for families to tools, methods and thus contribute to improving the daily lives of patients and those around them.
Do not hesitate to contact them and ask all your questions.
Departmental House of Disabled People
Get closer to that of your department for the constitution of your files.
->An Extr coordinatora-Vaillants MYT1L is at your service and will accompany you. CONTACT Stephanie at the following address:email@example.com
-> Link toADDITIONAL FORM (click on the underlined words) transmission of information to the MDPH to be attached when making a request to the Departmental House for Persons with Disabilities.
Explanations in pictures in this video at location 01:12:59, speech by Mrs. Soizic Maingant Le Gall (click on the underlined words)
-> Link to a resource to help you write yourLIFE PROJECT (click on life plan): APF France Handicap has published a guide for parents, spouses and other relatives who support a person with a disability in developing their life plan and personalized compensation plan.
-> Link to les RECOMMENDATIONS de laHother Health Authority:
"Recommendation for good practice - Neurodevelopmental disorders - Identification and orientation at risk-February 2020"
It stipulates the nature of the interventions to be implemented as early as possible according to the deficit of people at risk or carriers of a TND. This information can help you in your steps to set up, with the medical team following you, the care necessary for the person.at risk or carrier of a TND, and in order to obtain the aid accordingly during your requests to the MDPH for example.
"Accompaniment of the person with an intellectual development disorder (IDD) - Part 1"-Update February 2023
Recommendations of good practices for the accompaniment of the person presenting an intellectual development disorder (IDD).
This first part lays down the fundamentals to be able to understand the functioning of the person by taking into account his developmental trajectory, his skills, his age, his abilities and his pace of learning.
It also lays down the fundamentals of the necessary complementarity between families and professionals for support as close as possible to the person.
You will find 7 files including 6 translated into FALC (Easy to Read and Understand) for the persons concerned, as well as 2 supplements (summary and accompanying guide).
INSTITUTION, RESOURCE: National Education: education and disability
INCLUSIVE SCHOOL INFORMATION TOLL FREE 0 805 805 110
A unique number to support you in the schooling of your child with a disability.
RESOURCE: Need ofRESPITE :17 index cardsfor caregivers
They present the main respite solutions that currently exist, whether national schemes or exemplary local initiatives.
Be curious, take the time to read.There may be a solution for you at the cle !
TOOL: CONSENTpeople with disabilities: tool for reflection and support
This guide"Consent of the person with a disability" has been developed for professionals and carers to show how the search for adhesion and consent is a permanent quest with the person with a disability for their daily life, their choices of living space, their care, their life. sentimental...
TOOL : GENDARMERIE/POLICE Information Sheet for DISAPPEARANCES of AUTISTIC AND/OR INTELLECTUALLY DEFICIENT PEOPLE.
Since April 2022 there has been a prevention tool in the event of the disappearance of an autistic and/or intellectually disabled person for the gendarmerie and police services.
INFORMATION SHEET FORM(click on the underlined words)
📍To be completed in advance,
📍 To check if updated regularly,
📍 To keep on you (purse, photograph in the mobile phone)
📍 TO be available and up to date when needed!
Find the presentations of the association Les Extra-Vaillants MYT1L
on our YouTube channel
DIFFERENT CHILD : Resource siteunavoidable
10 sections rich in information, support, guidance ... in the areas of daily life, your rights, the presentation of rehabilitation methods, schooling ....
SCHOOL AND DISABILITY Ua real gold mine!
Here are their areas of expertise:
- Procedures and rights
- Other financial aid (excluding MDPH)
- Assistance with formalities relating to schooling
"Because what is essential for some is also more comfortable for everyone, Hop'Toys has been offering games and tools for 19 years to allow all children to develop their potential... whether they have specific needs or not. Hop 'Toys also offers on its blog free awareness-raising materials, in-depth articles, testimonials from experts and families and of course ideas for activities for everyone... in order to work towards the creation of a more inclusive society! excerpt from website
MORE FOR TEENS/ ADULTS/ PEER-HELP
Practical information and tutorials in FALC (Easy to read and understand) ·
Here it is an information site that helps your administrative procedures such as the MDPH, guardianship and curatorship, social rights, rights and duties...
CAP'acité is a brand that belongs to the Adapei du Morbihan - Les Papillons blancs.
My little accessible memos that deal with various subjects, for example: what is benevolence, the PPA, my sex life, what is self-determination, the 2005 law, my right to vote, the person of trust.....
They are made available free of charge. All have been reviewed, modified and validated by a group of self-advocates with intellectual disabilities.
The site from which these resources come is the property of Pas de Côté – Isabelle de Groot.
Its head office is located at Lieu dit Cathio Mouron 22 640 Plestan