This meeting is to review the revised survey following the two-week feedback period and agree the final version before deployment.
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.
The aim of the session is to resolve any remaining questions, confirm the final survey content and agree the next steps for deployment.
Please keep in touch - looking forward to working with you on this exciting project.
Sara
________________________________
From: Sara Elgott
Sent: Friday, 26 June 2026 08:59:36
To: Jo de Bry ; s.massucci@mitocon.it ; International Mito Patients ; ELENA ALVAREZ ; Margaret Moore ; Mariella Oster ; Katie Waller ; Nerea González Baena ; Aneesa Licorish ; Teresa Torre ; AMMi Asso ; philip.yeske ; Kira Mann
Cc: Balcells Cristy ; Safwaan Adam ; David McMinn
Subject: Re: Invitation to join the Genetic Diagnosis Lived Experience Project for Mitochondrial Diseases
Dear Colleagues,
Thank you to everyone who completed the Doodle poll.
To keep the project moving forward, we have scheduled the kick-off meeting for:
Tuesday 7 July 2026
11:00 am – 12:00 pm EDT (US East Coast)
3:00 pm – 4:00 pm BST (UK)
4:00 pm – 5:00 pm CEST (Central Europe)
A calendar invitation will follow shortly.
The OpalMedica team are really looking forward to meeting you all and beginning this exciting collaboration.
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.
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.
Thank you once again for your support. We look forward to working with you.
With best wishes,
Sara Elgott
Founder & CEO
OpalMedica Ltd
Address: Bruntwood SciTech, 1 Circle Square, Oxford Rd, Manchester M1 7FS
Landline: 0161 553 1749
Mobile: +44 (0)7470 314020
Email: sara@opalmedica.co.uk
Website: OpalMedica
[cid:767aeba2-77ec-4563-a922-8035ab3a1fa8]
________________________________
From: Nerea González Baena
Sent: Wednesday, June 17, 2026 9:55 AM
To: Aneesa Licorish ; Balcells Cristy
Cc: 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
Subject: Re: Invitation to join the Genetic Diagnosis Lived Experience Project for Mitochondrial Diseases
Aepmi is in too! ☺️
Enviado desde Outlook para Android
________________________________
From: Aneesa Licorish
Sent: Wednesday, 17 June 2026 10:51:26
To: Balcells Cristy
Cc: Nerea González 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
Subject: Re: Invitation to join the Genetic Diagnosis Lived Experience Project for Mitochondrial Diseases
Cristy,
Thank you always for bringing us all together. We are definitely interested as it aligns with our areas of interest regarding the diagnostic odyssey. I’ll fill the doodle poll out and I can’t wait to see you guys at UMDF’s Mitomed conference shortly.
Aneesa
On Tuesday, June 16, 2026, Balcells Cristy <Cristy.Balcells@ucb.com> wrote:
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.
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.
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.
Evidence 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.
This is a lengthy email but worth the read 🙂, so thank you in advance and please see the introduction from Sara, CEO at OpalMedica and our project partner and leader, below.
Two action steps I appreciate from you-
1.
Please 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)
2.
Complete the Doodle poll Sara has provided below for a kickoff call
As always, I am so grateful for your partnership,
Cristy
Cristy Balcells RN MSN
Global Patient Engagement & Advocacy Lead
Cristy.Balcells@ucb.com
+1 770 828 4478
[cid:cacecd9b-5174-4426-8cb3-7c92f1a8cc11]
Dear Colleagues,
I 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.
To 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:
https://doodle.com/group-poll/participate/dPKB11zb
The poll includes a range of options on 1 July and 7 July 2026 to accommodate organisations across North America and Europe.
________________________________
ABOUT OPALMEDICA
My 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.
This 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
