{"id":2843,"date":"2025-04-22T15:23:43","date_gmt":"2025-04-22T13:23:43","guid":{"rendered":"https:\/\/association-ammi.org\/news-and-events\/"},"modified":"2025-11-20T10:37:19","modified_gmt":"2025-11-20T09:37:19","slug":"news-and-events","status":"publish","type":"page","link":"https:\/\/association-ammi.org\/en\/news-and-events\/","title":{"rendered":"News and Events"},"content":{"rendered":"\t\t
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July<\/span> 2026<\/span> <\/h3> <\/th>\n\t\t\t\t\t

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  • \n\t\tE+A Board - Updates Survey<\/span>\n\t\t

    E+A Board - Updates Survey<\/span><\/strong><\/p>\n

    02\/07\/2026<\/span>  18h00<\/span> - 19h00<\/span>
    \n https:\/\/us06web.zoom.us\/j\/82839863123?pwd=DUKNyquNJ1aHbti2wE596JdqlHptam.1<\/span><\/p>\n

    \u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500
    E+A Alliance le est\u00e1 invitando a una reuni\u00f3n de Zoom programada.
    \u00danase a la reuni\u00f3n de Zoom
    https:\/\/us06web.zoom.us\/j\/82839863123?pwd=DUKNyquNJ1aHbti2wE596JdqlHptam.1<\/p>\n

    Ver informaci\u00f3n de la reuni\u00f3n con Zoom AI Companion
    https:\/\/us06web.zoom.us\/launch\/edl?muid=f6f6d3ce-5af2-47ad-990f-67804757f560<\/p>\n

    ID de reuni\u00f3n: 828 3986 3123
    C\u00f3digo de acceso: 167259<\/p>\n

    ---<\/p>\n

    M\u00f3vil con un toque
    +13017158592,,82839863123#,,,,*167259# Estados\u00a0Unidos (Washington DC)
    +13052241968,,82839863123#,,,,*167259# Estados\u00a0Unidos<\/p>\n

    ---<\/p>\n

    Unirse mediante SIP
    \u2022 82839863123@zoomcrc.com<\/p>\n

    Instrucciones para unirse
    https:\/\/us06web.zoom.us\/meetings\/82839863123\/invitations?signature=Ij-V6AgT-dXlyYKAuYuacXL9GEvheop9f-kON_mhGTc<\/p>\n

    \u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500<\/p>\n<\/div><\/div>\n

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  • \n\t\tGenetic Diagnosis Lived Experience Project: Kick Off<\/span>\n\t\t

    Genetic Diagnosis Lived Experience Project: Kick Off<\/span><\/strong><\/p>\n

    07\/07\/2026<\/span>  16h00<\/span> - 17h00<\/span>
    \n Microsoft Teams Meeting<\/span><\/p>\n

    ________________________________
    \nFrom: Sara Elgott
    \nSent: Friday, 26 June 2026 08:59:36
    \nTo: Jo de Bry ; s.massucci@mitocon.it ; International Mito Patients ; ELENA ALVAREZ ; Margaret Moore ; Mariella Oster ; Katie Waller ; Nerea Gonz\u00e1lez Baena ; Aneesa Licorish ; Teresa Torre ; AMMi Asso ; philip.yeske ; Kira Mann
    \nCc: Balcells Cristy ; Safwaan Adam ; David McMinn
    \nSubject: Re: Invitation to join the Genetic Diagnosis Lived Experience Project for Mitochondrial Diseases<\/p>\n

    Dear Colleagues,<\/p>\n

    Thank you to everyone who completed the Doodle poll.<\/p>\n

    To keep the project moving forward, we have scheduled the kick-off meeting for:<\/p>\n

    Tuesday 7 July 2026<\/p>\n

    11:00 am \u2013 12:00 pm EDT (US East Coast)
    \n3:00 pm \u2013 4:00 pm BST (UK)
    \n4:00 pm \u2013 5:00 pm CEST (Central Europe)<\/p>\n

    A calendar invitation will follow shortly.<\/p>\n

    The OpalMedica team are really looking forward to meeting you all and beginning this exciting collaboration.<\/p>\n

    This UCB-funded initiative is a fantastic opportunity to work together to better understand the often invisible years before a mitochondrial disease diagnosis. By combining the expertise and experiences of patient organisations from around the world, we hope to co-create a project that generates meaningful evidence to support future research, education, advocacy and ultimately earlier diagnosis.<\/p>\n

    For those who were unable to make this date, we completely understand. We will be happy to arrange follow-up discussions to ensure everyone has the opportunity to contribute to shaping the project.<\/p>\n

    Thank you once again for your support. We look forward to working with you.<\/p>\n

    With best wishes,<\/p>\n

    Sara Elgott
    \nFounder & CEO
    \nOpalMedica Ltd
    \nAddress: Bruntwood SciTech, 1 Circle Square, Oxford Rd, Manchester M1 7FS
    \nLandline: 0161 553 1749
    \nMobile: +44 (0)7470 314020
    \nEmail: sara@opalmedica.co.uk
    \nWebsite: OpalMedica<\/p>\n

    [cid:767aeba2-77ec-4563-a922-8035ab3a1fa8]<\/p>\n

    ________________________________
    \nFrom: Nerea Gonz\u00e1lez Baena
    \nSent: Wednesday, June 17, 2026 9:55 AM
    \nTo: Aneesa Licorish ; Balcells Cristy
    \nCc: Teresa Torre ; AMMi Asso ; philip.yeske ; Margaret Moore ; Katie Waller ; Mariella Oster ; Kira Mann ; ELENA ALVAREZ ; International Mito Patients ; s.massucci@mitocon.it ; Sara Elgott ; Jo de Bry
    \nSubject: Re: Invitation to join the Genetic Diagnosis Lived Experience Project for Mitochondrial Diseases<\/p>\n

    Aepmi is in too! \u263a\ufe0f<\/p>\n

    Enviado desde Outlook para Android
    \n________________________________
    \nFrom: Aneesa Licorish
    \nSent: Wednesday, 17 June 2026 10:51:26
    \nTo: Balcells Cristy
    \nCc: Nerea Gonz\u00e1lez Baena ; Teresa Torre ; AMMi Asso ; philip.yeske ; Margaret Moore ; Katie Waller ; Mariella Oster ; Kira Mann ; ELENA ALVAREZ ; International Mito Patients ; s.massucci@mitocon.it ; Sara Elgott ; Jo de Bry
    \nSubject: Re: Invitation to join the Genetic Diagnosis Lived Experience Project for Mitochondrial Diseases<\/p>\n

    Cristy,
    \nThank you always for bringing us all together. We are definitely interested as it aligns with our areas of interest regarding the diagnostic odyssey. I\u2019ll fill the doodle poll out and I can\u2019t wait to see you guys at UMDF\u2019s Mitomed conference shortly.<\/p>\n

    Aneesa<\/p>\n

    On Tuesday, June 16, 2026, Balcells Cristy <Cristy.Balcells@ucb.com> wrote:<\/p>\n

    Dear steer co, I missed seeing some of you earlier this month at EuroMit and look forward to seeing others later this week at UMDF! I am energized by all that YOU do and the progress of the worldwide Mito community as we enter the second half of 2026, and I hope you are also.<\/p>\n

    You may recall that I mentioned to you a project that I have been organizing to further explore the specific barriers to genetic diagnosis in mitochondrial disease. While this project is supported by UCB, I've determined that the best approach is to ask for your leadership in co-creating and driving the survey, so that you - as stewards of the patient community- will have access to the de-identified data, will be authors on the subsequent publication, and importantly, will ensure that the questions are relevant to your objectives as a global Mito community.<\/p>\n

    WHY do we need to uncover and further document the barriers? We already know that genetic testing is difficult to access and often takes years for a diagnosis.
    \nEvidence is powerful. While you may know intuitively or from your experience the barriers for your communities, the data from a global assessment and narratives from the individuals who faced diagnostic delays helps us to better solve the problem in the most effective and efficient manner possible. We can, together, direct resources with focus to where it will make an impact.<\/p>\n

    This is a lengthy email but worth the read \ud83d\ude42, so thank you in advance and please see the introduction from Sara, CEO at OpalMedica and our project partner and leader, below.<\/p>\n

    Two action steps I appreciate from you-<\/p>\n

    1.
    \nPlease reply to all and confirm your interest in participating (understood if you need more information to socialize more directly first with your organization's leadership, let us know in that case)
    \n 2.
    \nComplete the Doodle poll Sara has provided below for a kickoff call<\/p>\n

    As always, I am so grateful for your partnership,
    \nCristy<\/p>\n

    Cristy Balcells RN MSN
    \nGlobal Patient Engagement & Advocacy Lead
    \nCristy.Balcells@ucb.com<\/p>\n

    +1 770 828 4478<\/p>\n

    [cid:cacecd9b-5174-4426-8cb3-7c92f1a8cc11]<\/p>\n

    Dear Colleagues,
    \nI am delighted to introduce myself and OpalMedica, and to invite your organisation to participate in an important international research initiative that is being funded by UCB and developed in partnership with the mitochondrial disease community.
    \nTo help us schedule an initial kick-off meeting which will be held on Teams (link to follow in due course), please indicate your availability using the Doodle poll below:
    \nhttps:\/\/doodle.com\/group-poll\/participate\/dPKB11zb
    \nThe poll includes a range of options on 1 July and 7 July 2026 to accommodate organisations across North America and Europe.
    \n________________________________
    \nABOUT OPALMEDICA
    \nMy name is Sara Elgott and I am the Founder and CEO of OpalMedica, a UK-based medical technology company focused on reducing diagnostic delays in rare and underdiagnosed diseases.
    \nThis mission is deeply personal to me. My mother spent years being treated for the wrong condition and only received her correct diagnosis the day before she passed away. That experience shaped my career and, over the past 30 years, I have worked across the pharmaceutical industry, primarily in areas of significant unmet need and rare diseases, partnering with patient organisations, clinicians, researchers and industry to improve outcomes for people living with complex conditions.
    \nYou can learn more about OpalMedica at:
    \nwww.opalmedica.co.uk
    \nWe are excited to be working alongside the mitochondrial disease community on this important initiative, with UCB providing funding and support. Throughout our discussions, UCB has demonstrated<\/p>\n<\/div><\/div>\n

    Voir plus de d\u00e9tails<\/a><\/p><\/div>\n\t<\/li>\n\t

  • \n\t\tMeeting w\/Ashley (Koolen-de Vries Syndrome Foundation) - E+ Alliance<\/span>\n\t\t

    Meeting w\/Ashley (Koolen-de Vries Syndrome Foundation) - E+ Alliance<\/span><\/strong><\/p>\n

    07\/07\/2026<\/span>  16h00<\/span> - 17h00<\/span>
    \n https:\/\/us06web.zoom.us\/j\/85281260684?pwd=thtETGk04Xq5O7LYfQjChalYq7a1FV.1<\/span><\/p>\n

    \u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500
    E+A Alliance le est\u00e1 invitando a una reuni\u00f3n de Zoom programada.
    \u00danase a la reuni\u00f3n de Zoom
    https:\/\/us06web.zoom.us\/j\/85281260684?pwd=thtETGk04Xq5O7LYfQjChalYq7a1FV.1<\/p>\n

    Enlace al chat de la reuni\u00f3n
    https:\/\/us06web.zoom.us\/launch\/jc\/85281260684<\/p>\n

    Ver informaci\u00f3n sobre la reuni\u00f3n
    https:\/\/us06web.zoom.us\/launch\/edl?muid=1611cfc7-8227-4f5a-b588-810358851e8c<\/p>\n

    ID de reuni\u00f3n: 852 8126 0684
    C\u00f3digo de acceso: 764401<\/p>\n

    ---<\/p>\n

    M\u00f3vil con un toque
    +16892781000,,85281260684#,,,,*764401# Estados\u00a0Unidos
    +17193594580,,85281260684#,,,,*764401# Estados\u00a0Unidos<\/p>\n

    ---<\/p>\n

    Unirse mediante SIP
    \u2022 85281260684@zoomcrc.com<\/p>\n

    Instrucciones para unirse
    https:\/\/us06web.zoom.us\/meetings\/85281260684\/invitations?signature=IjOoVy-Qi7l2ZFjysiDWteetGyWOPBXgP4kr_GvknZ8<\/p>\n

    \u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500<\/p>\n<\/div><\/div>\n

    Voir plus de d\u00e9tails<\/a><\/p><\/div>\n\t<\/li>\n<\/ul>\n\n\t\t • <\/b> • <\/b><\/span>\n\t<\/div>\n<\/td>\n

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  • \n\t\tR\u00e9union Zoom de Association CA AMMi<\/span>\n\t\t

    R\u00e9union Zoom de Association CA AMMi<\/span><\/strong><\/p>\n

    08\/07\/2026<\/span>  20h30<\/span> - 22h00<\/span>
    \n https:\/\/us06web.zoom.us\/j\/84199771839?pwd=lBSQ17DfX6wxTcEI83rmqwbVbd9DwN.1<\/span><\/p>\n

    Association AMMi Emma Del-Rey vous invite \u00e0 une r\u00e9union Zoom programm\u00e9e.
    \nParticiper \u00e0 la r\u00e9union Zoom
    \nhttps:\/\/us06web.zoom.us\/j\/84199771839?pwd=lBSQ17DfX6wxTcEI83rmqwbVbd9DwN.1<\/p>\n

    Ordre du jour de r\u00e9union
    \nhttps:\/\/docs.zoom.us\/agenda\/doc\/089a13be-b60b-4335-b340-1ee02088901b<\/p>\n

    Lien du chat de la r\u00e9union
    \nhttps:\/\/us06web.zoom.us\/launch\/jc\/84199771839<\/p>\n

    ID de r\u00e9union: 841 9977 1839
    \nCode secret: 303878<\/p>\n

    ---<\/p>\n

    Une seule pression sur l\u2019appareil mobile
    \n+16699006833,,84199771839#,,,,*303878# \u00c9tats-Unis (San Jose)
    \n+16892781000,,84199771839#,,,,*303878# \u00c9tats-Unis<\/p>\n

    ---<\/p>\n

    Participez \u00e0 l\u2019aide d\u2019un protocole SIP
    \n\u2022 84199771839@zoomcrc.com<\/p>\n

    Instructions pour participer
    \nhttps:\/\/us06web.zoom.us\/meetings\/84199771839\/invitations?signature=KWl38O-BT6KS3qt6xsYC8X4RucVkRyS9padbMPrQCwY<\/p>\n<\/div><\/div>\n

    Voir plus de d\u00e9tails<\/a><\/p><\/div>\n\t<\/li>\n<\/ul>\n\n\t\t • <\/b><\/span>\n\t<\/div>\n<\/td>\n

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  • \n\t\tAMMi \/ UCB - \u00e9changes<\/span>\n\t\t

    AMMi \/ UCB - \u00e9changes<\/span><\/strong><\/p>\n

    09\/07\/2026<\/span>  10h00<\/span> - 10h30<\/span>
    \n R\u00e9union Microsoft Teams<\/span><\/p>\n

    Ch\u00e8re Emma,
    \nSuite \u00e0 nos \u00e9changes,
    \nVoici un lien pour notre r\u00e9union teams. L\u2019objectif est de discuter des nexts steps pour l\u2019infographie (+\/- videos) + de la mito week \/ TK2d day.
    \nBien \u00e0 vous,
    \nServane
    \n________________________________________________________________________________
    \nR\u00e9union Microsoft Teams
    \nRejoindre : https:\/\/teams.microsoft.com\/meet\/37609505345828?p=hDy8Me4dzny62GCJxw
    \nNum\u00e9ro de r\u00e9union : 376 095 053 458 28
    \nCode secret : oN7vs2G6
    \n________________________________
    \nBesoin d'aide ? | R\u00e9f\u00e9rence syst\u00e8me
    \nParticiper par t\u00e9l\u00e9phone
    \n+33 1 73 24 04 19,,280177061# France, All locations
    \nTrouver un num\u00e9ro local
    \nNum\u00e9ro de conf\u00e9rence t\u00e9l\u00e9phonique : 280 177 061#
    \nPour les organisateurs : Options de r\u00e9union | R\u00e9initialiser le code PIN d'appel
    \n________________________________________________________________________________<\/p>\n

    ________________________________
    \nUCB PHARMA, soci\u00e9t\u00e9 par actions simplifi\u00e9e au capital de 82.731.600 euros, immatricul\u00e9e au registre du commerce et des soci\u00e9t\u00e9s de Nanterre sous le num\u00e9ro 562 079 046, ayant son si\u00e8ge social sis Tour Emblem - 7, all\u00e9e de l\u2019Arche - 92400 Courbevoie<\/p>\n

    (Ref: #*UFR0226) [Ref-UFR0226]
    \n________________________________
    \nLegal Notice: This electronic mail and its attachments are intended solely for the person(s) to whom they are addressed and contain information which is confidential or otherwise protected from disclosure, except for the purpose for which they are intended. Dissemination, distribution, or reproduction by anyone other than the intended recipients is prohibited and may be illegal. If you are not an intended recipient, please immediately inform the sender and return the electronic mail and its attachments and destroy any copies which may be in your possession. UCB screens electronic mails for viruses but does not warrant that this electronic mail is free of any viruses. UCB accepts no liability for any damage caused by any virus transmitted by this electronic mail. (Ref: #*UG1107) [Ref-UG1107]
    \n________________________________<\/p>\n<\/div><\/div>\n

    Voir plus de d\u00e9tails<\/a><\/p><\/div>\n\t<\/li>\n<\/ul>\n\n\t\t • <\/b><\/span>\n\t<\/div>\n<\/td>\n

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  • \n\t\tMeeting with Olena (Access To Life) - E+ Alliance<\/span>\n\t\t

    Meeting with Olena (Access To Life) - E+ Alliance<\/span><\/strong><\/p>\n

    10\/07\/2026<\/span>  15h00<\/span> - 16h00<\/span>
    \n https:\/\/us06web.zoom.us\/j\/87640700021?pwd=1KiLJKfGhb5Pgp9m8jQZBJL7abhjMA.1<\/span><\/p>\n

    \u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500
    E+A Alliance le est\u00e1 invitando a una reuni\u00f3n de Zoom programada.
    \u00danase a la reuni\u00f3n de Zoom
    https:\/\/us06web.zoom.us\/j\/87640700021?pwd=1KiLJKfGhb5Pgp9m8jQZBJL7abhjMA.1<\/p>\n

    Enlace al chat de la reuni\u00f3n
    https:\/\/us06web.zoom.us\/launch\/jc\/87640700021<\/p>\n

    Ver informaci\u00f3n sobre la reuni\u00f3n
    https:\/\/us06web.zoom.us\/launch\/edl?muid=3b931bd8-ca89-4bb4-8d46-28a1f786a0ee<\/p>\n

    ID de reuni\u00f3n: 876 4070 0021
    C\u00f3digo de acceso: 059254<\/p>\n

    ---<\/p>\n

    M\u00f3vil con un toque
    +16465588656,,87640700021#,,,,*059254# Estados\u00a0Unidos (New York)
    +16469313860,,87640700021#,,,,*059254# Estados\u00a0Unidos<\/p>\n

    ---<\/p>\n

    Unirse mediante SIP
    \u2022 87640700021@zoomcrc.com<\/p>\n

    Instrucciones para unirse
    https:\/\/us06web.zoom.us\/meetings\/87640700021\/invitations?signature=Wz0rbN7NpRo3M2maRqwvM1aBld91AE1asnPXSkC0bjI<\/p>\n

    \u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500<\/p>\n<\/div><\/div>\n

    Voir plus de d\u00e9tails<\/a><\/p><\/div>\n\t<\/li>\n<\/ul>\n\n\t\t • <\/b><\/span>\n\t<\/div>\n<\/td>\n

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  • \n\t\tPAB Meeting on WG and Involvement<\/span>\n\t\t

    PAB Meeting on WG and Involvement<\/span><\/strong><\/p>\n

    13\/07\/2026<\/span>  16h00<\/span> - 17h30<\/span>
    \n Reminder - R\u00e9union Microsoft Teams<\/span><\/p>\n

    Dear PAB Members<\/p>\n

    We would like to invite you to take part in a dedicated and working PAB meeting focused on reviewing and strengthening patient involvement in the ERN working groups.
    \nTime was to short last meeting to finish the full Agenda
    \nThe meeting schedule is on July 13 from 16h \u2013 17h30<\/p>\n

    The topics and questions raised so far have been carefully captured and are not forgotten
    \nThis is a postponement intended to allow for a more structured and meaningful discussion.<\/p>\n

    Please find below the new Calendar 2026<\/p>\n

    * July 13 \u2013 PAB
    \n * October 12 - PAB
    \n * Save the date - Dec 2 Patient Workshop Paris
    \nKind Regards<\/p>\n

    Anne
    \nSC Team
    \n________________________________________________________________________________
    \nR\u00e9union Microsoft Teams
    \nRejoindre : https:\/\/teams.microsoft.com\/meet\/37521108116959?p=FaQbzEVs2RrVNjGG9W
    \nNum\u00e9ro de r\u00e9union : 375 211 081 169 59
    \nCode secret : Qq3Wu9No
    \n________________________________
    \nBesoin d'aide ? | R\u00e9f\u00e9rence syst\u00e8me
    \nPour les organisateurs : Options de r\u00e9union
    \n________________________________________________________________________________<\/p>\n

    Anne Hugon,
    \nCheffe de Projet ERN-ITHACA & CRMR<\/p>\n

    EU Project Manager & Coordination Officer
    \nEuropean Reference Network (ERN) ITHACA
    \nClinical Genetics Departement & CRMR CLAD IDF
    \nRobert Debr\u00e9 University Hospital - AP-HP. Nord \u2013 Universit\u00e9 de Paris \u2013 France
    \n06 68 96 91 07 \/ +33 1 40 03 23 39
    \n anne.hugon@aphp.fr https:\/\/ern-ithaca.eu
    \n[cid:image001.png@01DCDEC8.0D674750] [cid:image002.png@01DCDEC8.0D674750]
    \nERN ITHACA on Congenital Malformations and Rare Intellectual Disability<\/p>\n<\/div><\/div>\n

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  • \n\t\tE+A Board Meeting<\/span>\n\t\t

    E+A Board Meeting<\/span><\/strong><\/p>\n

    16\/07\/2026<\/span>  18h00<\/span> - 19h00<\/span>
    \n https:\/\/us06web.zoom.us\/j\/82839863123?pwd=DUKNyquNJ1aHbti2wE596JdqlHptam.1<\/span><\/p>\n

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    Enlace al chat de la reuni\u00f3n
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    ID de reuni\u00f3n: 828 3986 3123
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  • \n\t\tMNGIE Natural History Study - Patient Organisation Webinar 1<\/span>\n\t\t

    MNGIE Natural History Study - Patient Organisation Webinar 1<\/span><\/strong><\/p>\n

    20\/07\/2026<\/span>  18h00<\/span> - 18h30<\/span>
    \n Zoom - please see log in details below<\/span><\/p>\n

    Afternoon all,<\/p>\n

    Apologies for the duplicate invites for the MNGIE Natural History Study webinar (Monday 20th July).<\/p>\n

    We will now be hosting the webinar in zoom, rather than Microsoft Teams.<\/p>\n

    Please see the details for the zoom call below. I will cancel the Microsoft Teams links after this email.<\/p>\n

    Please do let me know if any questions.<\/p>\n

    We look forward to seeing you on Monday 20th July,<\/p>\n

    Kind regards<\/p>\n

    Emma<\/p>\n

    Topic: MNGIE Natural History Study - Patient Organisation Webinar 1
    \nTime: Jul 20, 2026 05:00 PM London
    \nJoin Zoom Meeting
    \nhttps:\/\/cam-ac-uk.zoom.us\/j\/83018447573?pwd=2bCOoqvdcbakHZrGSW0S3y5yKbJ2kB.1<\/p>\n

    Meeting chat link
    \nhttps:\/\/cam-ac-uk.zoom.us\/launch\/jc\/83018447573<\/p>\n

    Meeting ID: 830 1844 7573
    \nPasscode: 382702<\/p>\n

    ---<\/p>\n

    One tap mobile
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    Join by SIP
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    For more information and to find out how you can switch visit Joining NHS.net Connect \u2013 NHS.net Connect Support<\/p>\n<\/div><\/div>\n

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  • \n\t\tE+A Board - Updates Survey<\/span>\n\t\t

    E+A Board - Updates Survey<\/span><\/strong><\/p>\n

    23\/07\/2026<\/span>  18h00<\/span> - 19h00<\/span>
    \n https:\/\/us06web.zoom.us\/j\/82839863123?pwd=DUKNyquNJ1aHbti2wE596JdqlHptam.1<\/span><\/p>\n

    \u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500\u2500
    E+A Alliance le est\u00e1 invitando a una reuni\u00f3n de Zoom programada.
    \u00danase a la reuni\u00f3n de Zoom
    https:\/\/us06web.zoom.us\/j\/82839863123?pwd=DUKNyquNJ1aHbti2wE596JdqlHptam.1<\/p>\n

    Ver informaci\u00f3n de la reuni\u00f3n con Zoom AI Companion
    https:\/\/us06web.zoom.us\/launch\/edl?muid=f6f6d3ce-5af2-47ad-990f-67804757f560<\/p>\n

    ID de reuni\u00f3n: 828 3986 3123
    C\u00f3digo de acceso: 167259<\/p>\n

    ---<\/p>\n

    M\u00f3vil con un toque
    +13017158592,,82839863123#,,,,*167259# Estados\u00a0Unidos (Washington DC)
    +13052241968,,82839863123#,,,,*167259# Estados\u00a0Unidos<\/p>\n

    ---<\/p>\n

    Unirse mediante SIP
    \u2022 82839863123@zoomcrc.com<\/p>\n

    Instrucciones para unirse
    https:\/\/us06web.zoom.us\/meetings\/82839863123\/invitations?signature=Ij-V6AgT-dXlyYKAuYuacXL9GEvheop9f-kON_mhGTc<\/p>\n

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  • \n\t\tGenetic Diagnosis Lived Experience Project: Survey Review and Finalisation Meeting<\/span>\n\t\t

    Genetic Diagnosis Lived Experience Project: Survey Review and Finalisation Meeting<\/span><\/strong><\/p>\n

    28\/07\/2026<\/span>  16h00<\/span> - 17h00<\/span>
    \n Microsoft Teams Meeting<\/span><\/p>\n

    This meeting is to review the revised survey following the two-week feedback period and agree the final version before deployment.<\/p>\n

    Please add any comments and suggested changes directly to the survey working document using Track Changes by Tuesday 21 July. I will consolidate the feedback and circulate a revised version ahead of the meeting.<\/p>\n

    The aim of the session is to resolve any remaining questions, confirm the final survey content and agree the next steps for deployment.<\/p>\n

    Please keep in touch - looking forward to working with you on this exciting project.<\/p>\n

    Sara<\/p>\n

    ________________________________
    \nFrom: Sara Elgott
    \nSent: Friday, 26 June 2026 08:59:36
    \nTo: Jo de Bry ; s.massucci@mitocon.it ; International Mito Patients ; ELENA ALVAREZ ; Margaret Moore ; Mariella Oster ; Katie Waller ; Nerea Gonz\u00e1lez Baena ; Aneesa Licorish ; Teresa Torre ; AMMi Asso ; philip.yeske ; Kira Mann
    \nCc: Balcells Cristy ; Safwaan Adam ; David McMinn
    \nSubject: Re: Invitation to join the Genetic Diagnosis Lived Experience Project for Mitochondrial Diseases<\/p>\n

    Dear Colleagues,<\/p>\n

    Thank you to everyone who completed the Doodle poll.<\/p>\n

    To keep the project moving forward, we have scheduled the kick-off meeting for:<\/p>\n

    Tuesday 7 July 2026<\/p>\n

    11:00 am \u2013 12:00 pm EDT (US East Coast)
    \n3:00 pm \u2013 4:00 pm BST (UK)
    \n4:00 pm \u2013 5:00 pm CEST (Central Europe)<\/p>\n

    A calendar invitation will follow shortly.<\/p>\n

    The OpalMedica team are really looking forward to meeting you all and beginning this exciting collaboration.<\/p>\n

    This UCB-funded initiative is a fantastic opportunity to work together to better understand the often invisible years before a mitochondrial disease diagnosis. By combining the expertise and experiences of patient organisations from around the world, we hope to co-create a project that generates meaningful evidence to support future research, education, advocacy and ultimately earlier diagnosis.<\/p>\n

    For those who were unable to make this date, we completely understand. We will be happy to arrange follow-up discussions to ensure everyone has the opportunity to contribute to shaping the project.<\/p>\n

    Thank you once again for your support. We look forward to working with you.<\/p>\n

    With best wishes,<\/p>\n

    Sara Elgott
    \nFounder & CEO
    \nOpalMedica Ltd
    \nAddress: Bruntwood SciTech, 1 Circle Square, Oxford Rd, Manchester M1 7FS
    \nLandline: 0161 553 1749
    \nMobile: +44 (0)7470 314020
    \nEmail: sara@opalmedica.co.uk
    \nWebsite: OpalMedica<\/p>\n

    [cid:767aeba2-77ec-4563-a922-8035ab3a1fa8]<\/p>\n

    ________________________________
    \nFrom: Nerea Gonz\u00e1lez Baena
    \nSent: Wednesday, June 17, 2026 9:55 AM
    \nTo: Aneesa Licorish ; Balcells Cristy
    \nCc: Teresa Torre ; AMMi Asso ; philip.yeske ; Margaret Moore ; Katie Waller ; Mariella Oster ; Kira Mann ; ELENA ALVAREZ ; International Mito Patients ; s.massucci@mitocon.it ; Sara Elgott ; Jo de Bry
    \nSubject: Re: Invitation to join the Genetic Diagnosis Lived Experience Project for Mitochondrial Diseases<\/p>\n

    Aepmi is in too! \u263a\ufe0f<\/p>\n

    Enviado desde Outlook para Android
    \n________________________________
    \nFrom: Aneesa Licorish
    \nSent: Wednesday, 17 June 2026 10:51:26
    \nTo: Balcells Cristy
    \nCc: Nerea Gonz\u00e1lez Baena ; Teresa Torre ; AMMi Asso ; philip.yeske ; Margaret Moore ; Katie Waller ; Mariella Oster ; Kira Mann ; ELENA ALVAREZ ; International Mito Patients ; s.massucci@mitocon.it ; Sara Elgott ; Jo de Bry
    \nSubject: Re: Invitation to join the Genetic Diagnosis Lived Experience Project for Mitochondrial Diseases<\/p>\n

    Cristy,
    \nThank you always for bringing us all together. We are definitely interested as it aligns with our areas of interest regarding the diagnostic odyssey. I\u2019ll fill the doodle poll out and I can\u2019t wait to see you guys at UMDF\u2019s Mitomed conference shortly.<\/p>\n

    Aneesa<\/p>\n

    On Tuesday, June 16, 2026, Balcells Cristy <Cristy.Balcells@ucb.com> wrote:<\/p>\n

    Dear steer co, I missed seeing some of you earlier this month at EuroMit and look forward to seeing others later this week at UMDF! I am energized by all that YOU do and the progress of the worldwide Mito community as we enter the second half of 2026, and I hope you are also.<\/p>\n

    You may recall that I mentioned to you a project that I have been organizing to further explore the specific barriers to genetic diagnosis in mitochondrial disease. While this project is supported by UCB, I've determined that the best approach is to ask for your leadership in co-creating and driving the survey, so that you - as stewards of the patient community- will have access to the de-identified data, will be authors on the subsequent publication, and importantly, will ensure that the questions are relevant to your objectives as a global Mito community.<\/p>\n

    WHY do we need to uncover and further document the barriers? We already know that genetic testing is difficult to access and often takes years for a diagnosis.
    \nEvidence is powerful. While you may know intuitively or from your experience the barriers for your communities, the data from a global assessment and narratives from the individuals who faced diagnostic delays helps us to better solve the problem in the most effective and efficient manner possible. We can, together, direct resources with focus to where it will make an impact.<\/p>\n

    This is a lengthy email but worth the read \ud83d\ude42, so thank you in advance and please see the introduction from Sara, CEO at OpalMedica and our project partner and leader, below.<\/p>\n

    Two action steps I appreciate from you-<\/p>\n

    1.
    \nPlease reply to all and confirm your interest in participating (understood if you need more information to socialize more directly first with your organization's leadership, let us know in that case)
    \n 2.
    \nComplete the Doodle poll Sara has provided below for a kickoff call<\/p>\n

    As always, I am so grateful for your partnership,
    \nCristy<\/p>\n

    Cristy Balcells RN MSN
    \nGlobal Patient Engagement & Advocacy Lead
    \nCristy.Balcells@ucb.com<\/p>\n

    +1 770 828 4478<\/p>\n

    [cid:cacecd9b-5174-4426-8cb3-7c92f1a8cc11]<\/p>\n

    Dear Colleagues,
    \nI am delighted to introduce myself and OpalMedica, and to invite your organisation to participate in an important international research initiative that is being funded by UCB and developed in partnership with the mitochondrial disease community.
    \nTo help us schedule an initial kick-off meeting which will be held on Teams (link to follow in due course), please indicate your availability using the Doodle poll below:
    \nhttps:\/\/doodle.com\/group-poll\/participate\/dPKB11zb
    \nThe poll includes a range of options on 1 July and 7 July 2026 to accommodate organisations across North America and Europe.
    \n________________________________
    \nABOUT OPALMEDICA
    \nMy name is Sara Elgott and I am the Founder and CEO of OpalMedica, a UK-based medical technology company focused on reducing diagnostic delays in rare and underdiagnosed diseases.
    \nThis mission is deeply personal to me. My mother spent years being treated for the wrong condition and only received her correct diagnosis the day before she passed away. That experience shaped my<\/p>\n<\/div><\/div>\n

    Voir plus de d\u00e9tails<\/a><\/p><\/div>\n\t<\/li>\n<\/ul>\n\n\t\t • <\/b><\/span>\n\t<\/div>\n<\/td>\n

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  • \n\t\tE+A Board - Updates Survey<\/span>\n\t\t

    E+A Board - Updates Survey<\/span><\/strong><\/p>\n

    30\/07\/2026<\/span>  18h00<\/span> - 19h00<\/span>
    \n https:\/\/us06web.zoom.us\/j\/82839863123?pwd=DUKNyquNJ1aHbti2wE596JdqlHptam.1<\/span><\/p>\n

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    https:\/\/us06web.zoom.us\/launch\/edl?muid=f6f6d3ce-5af2-47ad-990f-67804757f560<\/p>\n

    ID de reuni\u00f3n: 828 3986 3123
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