It has cut us off from physical contact and exchanges, from being able to organize events, and from receiving optimal care.
The association has had to adapt as best as possible, meaning continuing various meetings via video conference, coming up with ideas for virtual events or fundraising to continue supporting research projects and also helping families who need it even more during this period.
We remain, of course, at your disposal and strive to meet your expectations as best as possible. However, please do not hesitate to share your ideas and participate in the life of the association, as it can only thrive thanks to you.
Our Patron, Guy Lecluyse, is always by our side and provides his usual support. He regularly checks in with AMMi and truly hopes to be able to interact with all of you when circumstances allow.
A.M.Mi’s participation in various meetings:
– EURORDIS’s mission is to bring together a strong pan-European community of patient organizations and some 30 million
people affected by rare diseases, and to be their voice before European institutions.
– EURORDIS is at the heart of the regulatory process. Our contribution has been decisive in the adoption of important European legislative texts in the field of rare diseases and orphan drugs, such as the EU Regulations on orphan medicinal products, on medicinal products for pediatric use, and on advanced therapy medicinal products.
– By partnering with national rare disease federations in several countries, EURORDIS also influences national processes and advocates for the adoption and implementation of national strategies or plans against rare diseases across all European countries.
Eurordis’s main project: Rare 2030. This project is important for the entire European rare disease community. Rare2030 prepares a better future for people living with a rare disease in Europe by using foresight. Foresight is a tool that provides us with different future scenarios and defines roadmaps on how we can achieve them through policy and strategy changes to better shape the future of the rare disease community. The health of 30 million people living with a rare disease in Europe must not be left to chance.
Living Better with a Rare Disease: Harmonizing Neonatal Screening
February 17, 2021
International Rare Disease Day 2021: Share Your Colors
March 17, 2021
A New European Policy Framework for Rare Diseases: Eight Recommendations to Leave No One Affected by Rare Disease
Behind
June 10, 2021
IMP
FILENMUS
G2M PATHWAYS
The G2M rare disease health pathway – Hereditary Metabolic Diseases – was accredited in February 2014, as part of the 2nd National Rare Diseases Plan, then re-accredited in July 2019 as part of the 3rd National Rare Diseases Plan. Its coordination is currently entrusted to Professor Pascale Delonlay.
Awareness Week
on Mitochondrial Diseases
For those who could not attend the web conference on February 28, 2021, here is the link.
Presented by:
Prof. Munnich, Pediatric Geneticist and President of the Imagine Foundation
Dr. Agnès Rötig, Director of the Mitochondrial Disease Genetics Laboratory, Imagine Institute
Prof. Jean-Paul Bonnefont, Coordinator of the CARAMEL Reference Center, Necker Hospital
Dr. Giulia Barcia, Hospital Practitioner, Medical Genetics Department, Necker Hospital
Françoise Tissot, A.M.Mi Representative
YouTube: Mitochondrial Diseases – Rare Disease Day 2021@imagine
EVENTS FOR 2021
The “Carré Sud” Restaurant
A big thank you to Patricia and Nicolas Caballero for their initiative for Rare Disease Day in memory of their little boy who went to join the stars.
They are restaurateurs, and for every takeaway menu sold, they donated €1.50 to A.M.Mi, which helped raise €526.50!!! A big congratulations to them and to everyone who supported them in this action.
Carré Sud Restaurant
55 avenue de la gare
42210 Montrond-les-Bains
Race of Heroes
Stay connected to our Facebook page and the A.M.Mi website for more information in the coming weeks.
Decommissioned Street Signs to Become Works of Art in Lisieux
Thanks to the initiative of Virginie Olive, an AMMI member.
Rather than discarding decommissioned street signs, the city of Lisieux wishes to transform them into works of art. In partnership with the L’Écloserie collective, artists are invited to customize the signs, which will then be auctioned off for the benefit of an association.
Our patron, Guy Lecluyse, is participating in this initiative and, depending on health conditions, will be present at the exhibition at Espace Victor-Hugo.
Charity Evening for the Benefit of A.M.Mi
Sandra and Marc Maximo had to cancel and postpone the live salsa and zumba music entertainment evening at the Maulette (78) village hall several times; we are crossing our fingers that this event will take place in October 2021!!!
We are counting on you and your ideas to keep the association active and known during this very complicated period.
Seeking Your Input
Ideas for discussion:
It seems important to us to maintain contact with you, so we would like to hold a video exchange every two months on different themes (quality of care during this Covid period, living with disability within the sibling group, etc.). Please do not hesitate to send us an email with your theme ideas.
Thursdays are GIVEME 5 on Facebook or YouTube, so don’t hesitate to watch, like, and share!!!
“GIVEME 5” is a pop-rock music group, strongly supported by volunteers and other associations (disabled dance, hearing-impaired volunteers, visually impaired, professional dancers or not, young people…) who have been organizing a great concert for the benefit of A.M.Mi in Toulouse for several years. But their goal is also to raise awareness of our association with every performance they give.
During this very difficult period for performing, they came up with the idea of making short videos every week that you can watch on Facebook or YouTube, always with the aim of promoting A.M.Mi and mitochondrial diseases.
[button link=”https://www.youtube.com/playlist?list=PLKmefz2WQDB5eAk0A5Qau6PFbHjot71eF” color=”purple”]AMMi TV[/button]
Brief Information on Supplementary Health Insurance
Even if certain conditions or disabilities allow for 100% reimbursement of the Social Security rate, it is not excluded that you may still be responsible for additional fees.
However, it is not always easy to find supplementary health insurance contracts when the costs to be covered are high and supplementary insurance providers deem the risks too significant. This is why several organizations offer contracts adapted for health insurance for people with disabilities:
• April
• Solidaris Handicap
• Intégrance
Etc.
They notably offer supplementary insurance contracts for motor disabilities, health insurance for the visually impaired, and health insurance for the hearing impaired.
You also have access to solidarity supplementary health insurance if your resources are modest; the Health Insurance (Assurance Maladie) can help you with your health expenses. To qualify, you must be covered by health insurance and not exceed the maximum income limit. You will find all information via the link below:
[button link=”https://www.ameli.fr/vendee/assure/droits-demarches/difficultes-acces-droits-soins/complementaire-sante/complementaire-sante-solidaire-qui-peut-en-beneficier-et-comment#?” color=”aqua”]AMELI.FR[/button]
What’s New on the A.M.Mi Website
“EQUIPMENT”The idea is to donate or lend equipment (adult and child) that we possess and wish to dispose of (electric/manual wheelchair, bath seat, specialized stroller, medical bed, etc.).
For those who wish to participate in this experience, we ask you to contact the association’s email: assoammi@gmail.com and send us photos and a description of your equipment (please note, it must be in good condition).
THE FAMILY WEEKEND
Given the health situation, we must once again cancel our weekend this year, hoping that we can meet again in 2022!!!
General Assembly
The General Assembly will take place in June (the date will be confirmed later) via video conference.
With the convocation, you will receive the procedure to follow for registration and connection.
To best prepare for this General Assembly, you can contact us now if you wish to join the board of directors, the regional delegation, or offer your help in an area you master.
To vote, your membership fee must be up to date, still at the rate of €25, which entitles you to a tax receipt, just like donations.
For payment, several options are available:
-the website with a link to JOINLY
-bank transfer (RIB sent by email upon request)
-check to be sent to the treasurer Nathalie BIENCOURT 11 rue de la gare 80250 Ailly sur Noye
[button link=”https://association-ammi.org/wp-content/uploads/2021/04/Bulletin-adhesion-dons-AMMi-2021.pdf” color=”orange”]Download Membership Form[/button]
