{"id":3223,"date":"2021-05-07T14:32:01","date_gmt":"2021-05-07T12:32:01","guid":{"rendered":"https:\/\/association-ammi.org\/did-you-miss-the-latest-newsletter\/"},"modified":"2021-05-07T14:32:01","modified_gmt":"2021-05-07T12:32:01","slug":"did-you-miss-the-latest-newsletter","status":"publish","type":"post","link":"https:\/\/association-ammi.org\/en\/did-you-miss-the-latest-newsletter\/","title":{"rendered":"Did you miss the latest Newsletter?"},"content":{"rendered":"
\n

\"AMMi<\/p>\n<\/div>\n

A word from the President:<\/strong><\/div>\n
<\/div>\n
Dear members,<\/div>\n
We have all been living to the rhythm of this pandemic for a year now!!!
\nIt has cut us off from physical contact and exchanges, from being able to organize events, and from receiving optimal care.
\nThe 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.
\nWe 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.
\nOur 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. <\/div>\n
<\/div>\n
Emma Del-Rey<\/em><\/div>\n
<\/div>\n
\n

A.M.Mi’s participation in various meetings:<\/h1>\n<\/div>\n
<\/div>\n
\"\"<\/a><\/div>\n
\n
<\/div>\n
<\/div>\n
<\/div>\n
Eurordis<\/strong> is a non-governmental alliance of patient organizations, driven by patients themselves. It unites 956 patient organizations for rare diseases across 73 countries, covering over 4000 diseases.
\n– EURORDIS’s mission is to bring together a strong pan-European community of patient organizations and some 30 million
\npeople affected by rare diseases, and to be their voice before European institutions.
\n– 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.
\n– 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.
\nEurordis’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. <\/div>\n
\n
Eurordis Event Dates:<\/div>\n
January 20, 2021<\/strong>
\nLiving Better with a Rare Disease: Harmonizing Neonatal Screening
\nFebruary 17, 2021<\/strong>
\nInternational Rare Disease Day 2021: Share Your Colors
\nMarch 17, 2021<\/strong>
\nA New European Policy Framework for Rare Diseases: Eight Recommendations to Leave No One Affected by Rare Disease
\nBehind
\nJune 10, 2021<\/strong><\/div>\n
Eurordis General Assembly<\/div>\n
<\/div>\n<\/div>\n
\"\"<\/a><\/div>\n

IMP<\/strong><\/h2>\n
Objectives:<\/strong> To gather and represent the maximum number of patient associations internationally. To build bridges between patients, clinicians, and researchers to improve the quality of life for those affected. <\/div>\n
Working Groups:<\/strong> International Patient Database (G\u00e9nomit) Chronic Pain in Patients with Mitochondrial Disease Update of the List of Undesirable Medications for Patients Mitochondrial Disease Awareness Week (September)<\/div>\n
Date:<\/strong><\/div>\n
On January 18<\/strong>, a meeting of all IMP members was held for introductions, as new members have recently joined the association.<\/div>\n
March 25 and May 27<\/strong>: IMP board meeting<\/div>\n
June 10, 2021:<\/strong> IMP General Assembly with re-election of the board<\/div>\n
September 2021:<\/strong> 10th anniversary of IMP’s creation; how to celebrate this event is yet to be determined. September 17-25: World Mitochondrial Disease Awareness Week<\/div>\n<\/div>\n
\"\"<\/a><\/div>\n

FILENMUS<\/h2>\n
To facilitate, coordinate, and promote exchanges among the various stakeholders in the sector. To plan regular interprofessional meetings. To better define the care pathway for patients and general practitioners. To identify extreme situations (including emergencies). To make the progress and achievements of the neuromuscular network more visible. To facilitate and coordinate actions among the various stakeholders involved in the diagnosis, care, and management of patients with neuromuscular disease. To enhance the utilization of databases. To pool resources: pooling communication means for patients. To implement a shared strategy for both the organization of neuromuscular care provision and research directions. <\/div>\n
<\/div>\n
\n

\"\"<\/a>\"\"<\/a>\"\"<\/a><\/p>\n

\n

G2M PATHWAYS<\/h2>\n<\/div>\n

\"\"<\/a><\/p>\n

\n

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. <\/p>\n<\/div>\n<\/div>\n

\n

Awareness Week
\non Mitochondrial Diseases<\/h2>\n<\/div>\n
\n

For those who could not attend the web conference on February 28, 2021, here is the link<\/a>.
\nPresented by:
\nProf. Munnich, Pediatric Geneticist and President of the Imagine Foundation
\nDr. Agn\u00e8s R\u00f6tig, Director of the Mitochondrial Disease Genetics Laboratory, Imagine Institute
\nProf. Jean-Paul Bonnefont, Coordinator of the CARAMEL Reference Center, Necker Hospital
\nDr. Giulia Barcia, Hospital Practitioner, Medical Genetics Department, Necker Hospital
\nFran\u00e7oise Tissot, A.M.Mi Representative
\nYouTube: Mitochondrial Diseases – Rare Disease Day 2021@imagine<\/p>\n<\/div>\n

EVENTS FOR 2021<\/h1>\n

The “Carr\u00e9 Sud” Restaurant<\/h2>\n

\"\"<\/a><\/p>\n

\n

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.<\/p>\n

They are restaurateurs, and for every takeaway menu sold, they donated \u20ac1.50 to A.M.Mi, which helped raise \u20ac526.50!!! A big congratulations to them and to everyone who supported them in this action.<\/p>\n

Carr\u00e9 Sud Restaurant
\n55 avenue de la gare
\n42210 Montrond-les-Bains<\/p>\n

\n

Race of Heroes\"\"<\/a><\/h2>\n<\/div>\n
<\/div>\n
For the first time, A.M.Mi will participate in the virtual Race of Heroes on Sunday, June 27.
\nStay connected to our Facebook page and the A.M.Mi website for more information in the coming weeks.<\/div>\n
\n

Decommissioned Street Signs to Become Works of Art in Lisieux<\/h2>\n<\/div>\n

\"\"<\/a><\/p>\n

\n

Thanks to the initiative of Virginie Olive, an AMMI member.<\/p>\n

Rather than discarding decommissioned street signs, the city of Lisieux wishes to transform them into works of art. In partnership with the L’\u00c9closerie collective, artists are invited to customize the signs, which will then be auctioned off for the benefit of an association.
\nOur patron, Guy Lecluyse, is participating in this initiative and, depending on health conditions, will be present at the exhibition at Espace Victor-Hugo. <\/p>\n

\n

Charity Evening for the Benefit of A.M.Mi<\/h2>\n

\"\"<\/a><\/p>\n

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!!!
\nWe are counting on you and your ideas to keep the association active and known during this very complicated period.<\/p>\n<\/div>\n

\n

Seeking Your Input<\/h2>\n

\"\"<\/a><\/p>\n

Ideas for discussion:<\/strong>
\nIt 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.<\/p>\n<\/div>\n

\n

Thursdays are GIVEME 5 on Facebook or YouTube, so don’t hesitate to watch, like, and share!!!<\/h2>\n

\"\"<\/a><\/p>\n

“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.
\nDuring 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. <\/p>\n

[button link=”https:\/\/www.youtube.com\/playlist?list=PLKmefz2WQDB5eAk0A5Qau6PFbHjot71eF” color=”purple”]AMMi TV[\/button]<\/p>\n

\n

Brief Information on Supplementary Health Insurance<\/h2>\n

\"\"<\/a><\/p>\n

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.
\nHowever, 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: <\/p>\n

\u2022 April<\/a>
\n\u2022 Solidaris Handicap<\/a>
\n\u2022 Int\u00e9grance<\/a><\/p>\n

Etc.<\/p>\n

They notably offer supplementary insurance contracts for motor disabilities, health insurance for the visually impaired, and health insurance for the hearing impaired.<\/p>\n

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: <\/p>\n

[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]<\/p>\n

What’s New on the A.M.Mi Website<\/strong><\/h1>\n
You will very soon be able to consult a new experimental section:
\n“EQUIPMENT”<\/strong>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.).
\nFor 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).<\/p>\n<\/div>\n
Thank you<\/div>\n

THE FAMILY WEEKEND<\/strong><\/h1>\n

\"\"<\/a><\/p>\n

Given the health situation, we must once again cancel our weekend this year, hoping that we can meet again in 2022!!!<\/p>\n

\n

General Assembly<\/h2>\n

The General Assembly will take place in June (the date will be confirmed later) via video conference.
\nWith the convocation, you will receive the procedure to follow for registration and connection.
\nTo 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.<\/p>\n

To vote, your membership fee must be up to date, still at the rate of \u20ac25, which entitles you to a tax receipt, just like donations.<\/p>\n

For payment, several options are available:
\n-the website with a link to JOINLY
\n-bank transfer (RIB sent by email upon request)
\n-check to be sent to the treasurer Nathalie BIENCOURT 11 rue de la gare 80250 Ailly sur Noye<\/p>\n

[button link=”https:\/\/association-ammi.org\/wp-content\/uploads\/2021\/04\/Bulletin-adhesion-dons-AMMi-2021.pdf” color=”orange”]Download Membership Form[\/button]<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

A word from the President: Dear members, We have all been living to the rhythm of this pandemic for a year now!!! It has cut \u2026<\/p>\n","protected":false},"author":2,"featured_media":3224,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[35],"tags":[],"class_list":["post-3223","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"yoast_head":"\nDid you miss the latest Newsletter? - L'AMMi<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/association-ammi.org\/en\/did-you-miss-the-latest-newsletter\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Did you miss the latest Newsletter? - L'AMMi\" \/>\n<meta property=\"og:description\" content=\"A word from the President: Dear members, We have all been living to the rhythm of this pandemic for a year now!!! 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