Calendar of Events
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Parent and Caregiver Virtual Support Meeting March 27
Parent and Caregiver Virtual Support Meeting March 27
Parent and Caregiver Virtual Support Meeting Hello Parents and Caregivers impacted by Mitochondrial Disease! Please join us for a Parent and Caregiver Virtual Support Meeting. We will get to know each other, share resources, and build community! Join us for a VIRTUAL MEETING!*** Please note that this is not our usual date. March 27,2023 8:00pm-9:00pm […]
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Rocky Mountain Virtual Support Group Meeting 2023
Rocky Mountain Virtual Support Group Meeting 2023
Join us for this special support meeting for patients and families in the Rocky Mountain Region!
1 event,
Webinar – mitoSHARE – First Year Update: What We’ve Learned, and What Comes Next
Webinar – mitoSHARE – First Year Update: What We’ve Learned, and What Comes Next
mitoSHARE – First Year Update: What We’ve Learned, and What Comes Next Tune in as Dr. Philip Yeske, UMDF's Science & Alliance Officer and Nicole Wilson, mitoSHARE Registry Coordinator, gives an update on UMDF’s patient registry, mitoSHARE, one year after the platform's launch. Dr. Yeske and Nicole will also provide a primer on the importance […]
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Teen and Young Adult Virtual Meet-Up Ages 16-35
Teen and Young Adult Virtual Meet-Up Ages 16-35
UMDF Teen/Young Adult "Virtual Meet-Up" Teens and Young Adults Age 16-35 Every Friday! 8:00pm ET Join us EVERY Friday for a VIRTUAL Meet-Up! Join us for this "Virtual Meet-Up"! It is tough being stuck at home, but you are not alone. Let's get together, share coping tips and have some FUN! UMDF Support Ambassadors, Kristi […]
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California Virtual Support Group Meeting
California Virtual Support Group Meeting
UMDF hosts regular virtual support group meetings and events for patients and families affected by mitochondrial disease. Join us to gain coping tips, share your story and connect with others. We hope you will attend and see that you are not alone. The first Monday of each month• 10:00am – 11:00am Pacific Learn more & […]
1 event,
LHON – Teens
LHON – Teens
This call is ONLY for teens (under 18) who are affected with LHON vision loss. Hosts Jeremy Poincenot and Molly Garrone lead this call. This call takes place at 5:00pm PST/8:00pm EST every other month on the first Tuesday of the month for an hour and a half unless otherwise noted.
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LHON Live! Monthly Call
LHON Live! Monthly Call
NOTE: Unless specific to a geographic location - all LHON virtual meetings will be set in Eastern Time. This call is for everyone interested in LHON...those affected, carriers, or sighted supporters...all are welcome. You can speak up and share your thoughts, or just listen to what others have to say...It's your call! Hosts for the Call: […]
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Adult Virtual Support Meeting
Adult Virtual Support Meeting
Adult Virtual Support Meeting Hello Adults impacted by Mitochondrial Disease! Please join us for an Adult Virtual Support Meeting. We will get to know each other, share resources, and build community! Join us for a VIRTUAL MEETING! The FIRST Thursday of every month! 8:00pm-9:00pm ET Register HERE After registering, you will receive a confirmation email containing information about joining […]
1 event,
Teen and Young Adult Virtual Meet-Up Ages 16-35
Teen and Young Adult Virtual Meet-Up Ages 16-35
UMDF Teen/Young Adult "Virtual Meet-Up" Teens and Young Adults Age 16-35 Every Friday! 8:00pm ET Join us EVERY Friday for a VIRTUAL Meet-Up! Join us for this "Virtual Meet-Up"! It is tough being stuck at home, but you are not alone. Let's get together, share coping tips and have some FUN! UMDF Support Ambassadors, Kristi […]
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LHON Onset at Age 60+
LHON Onset at Age 60+
Were you affected by LHON at age 60 or older? Would you like to network with others in a similar situation? If so, you are welcome to join our Zoom networking event exclusively for individuals affected at age 60 or older.
1 event,
LHON – Young Adults
LHON – Young Adults
This call is ONLY for young adults (18 and over) who are affected with LHON vision loss.
1 event,
LHON & Charles Bonnet Syndrome Connect
LHON & Charles Bonnet Syndrome Connect
Many people who are affected with LHON vision also experience Charles Bonnet Syndrome (CBS), the experience of phantom images or hallucinations which co-exist with one's regular visual experience. They can be simple or complex, static or moving, color or black and white. CBS is under diagnosed, and can cause mental stress for those living with […]
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1 event,
Teen and Young Adult Virtual Meet-Up Ages 16-35
Teen and Young Adult Virtual Meet-Up Ages 16-35
UMDF Teen/Young Adult "Virtual Meet-Up" Teens and Young Adults Age 16-35 Every Friday! 8:00pm ET Join us EVERY Friday for a VIRTUAL Meet-Up! Join us for this "Virtual Meet-Up"! It is tough being stuck at home, but you are not alone. Let's get together, share coping tips and have some FUN! UMDF Support Ambassadors, Kristi […]
1 event,
Northeast PA Support Meeting
Northeast PA Support Meeting
Support Meeting- Northeast PA *** We will be resuming in-person support meetings this month!!*** Saturday, January 21 • 1:00pm – 3:00pm Eastern St. Luke's Hospital Priscilla Payne Hurd Education Room Room 104 801 Ostrum Street Bethlehem, PA 18015 You are not alone. Join us to share coping tips and connect with others. We […]
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LHON – New York, New Jersey, Pennsylvania Connect
LHON – New York, New Jersey, Pennsylvania Connect
This call is for those living in New York, New Jersey, or Pennsylvania with an interest in LHON. Hosts Jim and Mary Tolve facilitate this call. Consider joining the call and sharing your experiences with others in a similar situation.
2 events,
Parent and Caregiver Virtual Support Meeting
Parent and Caregiver Virtual Support Meeting
Parent and Caregiver Virtual Support Meeting Hello Parents and Caregivers impacted by Mitochondrial Disease! Please join us for a Parent and Caregiver Virtual Support Meeting. We will get to know each other, share resources, and build community! Join us for a VIRTUAL MEETING! The THIRD Monday of every month! 8:00pm-9:00pm ET Register HERE After registering, you […]
LHON – Pacific Northwest Connect
LHON – Pacific Northwest Connect
This is a call for those living in the Pacific Northwest with an interest in LHON. Consider joining the call to share your experiences with others in a similar situation.
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Dads of LHON-Affected “Kids of All Ages”
Dads of LHON-Affected “Kids of All Ages”
NOTE: Unless specific to a geographic location - all LHON virtual meetings will be set in Eastern Time. The bimonthly call for Dads of LHON-Affected "Kids of All Ages" takes place on the third Wednesday of every other month at 8:00pm EST/5:00pm PST. Hosts Tony Wright and Jim Tolve host this open-discussion format call. If you're a […]
1 event,
Western New York Support Meeting
Western New York Support Meeting
"Virtual AND In-Person" Support Meeting- Western New York You are not alone. Join us to share coping tips and connect with others. We are now meeting in-person. Please let us know if you will be attending by registering HERE. The third Thursday of each month 6:00pm - 7:00pm Register in advance for this meeting. *** […]
1 event,
Teen and Young Adult Virtual Meet-Up Ages 16-35
Teen and Young Adult Virtual Meet-Up Ages 16-35
UMDF Teen/Young Adult "Virtual Meet-Up" Teens and Young Adults Age 16-35 Every Friday! 8:00pm ET Join us EVERY Friday for a VIRTUAL Meet-Up! Join us for this "Virtual Meet-Up"! It is tough being stuck at home, but you are not alone. Let's get together, share coping tips and have some FUN! UMDF Support Ambassadors, Kristi […]
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1 event,
LHON Assistive Technology Meeting
LHON Assistive Technology Meeting
This Zoom event is for anyone interested in discussing LHON & Assistive Technology. T
1 event,
UMDF Ask the Mito Doc Webcast Series – Endocrine Complications of Mitochondrial Disease
UMDF Ask the Mito Doc Webcast Series – Endocrine Complications of Mitochondrial Disease
We are looking forward to hearing from Dr. Shana McCormack and Dr. David Weber to better understand Endocrine Disorders of Mitochondrial Disease.
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1 event,
Central Region Virtual Support Meeting
Central Region Virtual Support Meeting
Central Region Virtual Support Meeting UMDF hosts regular virtual support group meetings and events for patients and families affected by mitochondrial disease. Join us to gain coping tips, share your story and connect with others. We hope you will attend and see that you are not alone. Thursday, January 26 • 7:00pm – 8:00pm Central Learn […]
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Teen and Young Adult Virtual Meet-Up Ages 16-35
Teen and Young Adult Virtual Meet-Up Ages 16-35
UMDF Teen/Young Adult "Virtual Meet-Up" Teens and Young Adults Age 16-35 Every Friday! 8:00pm ET Join us EVERY Friday for a VIRTUAL Meet-Up! Join us for this "Virtual Meet-Up"! It is tough being stuck at home, but you are not alone. Let's get together, share coping tips and have some FUN! UMDF Support Ambassadors, Kristi […]
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