Event Series LHON – Midwest Connect

LHON – Midwest Connect

This call is for those living in the Midwest with an interest in LHON. Consider joining the call and sharing your experiences with others in a similar situation.  This call takes place quarterly on the Third Monday of each month at 7pm-8pm Central/8:00pm-9:00pm Eastern. March 21 from 8:00pm – 9:00pm Eastern June 20 from 8:00pm […]

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 […]

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 […]

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 […]

Event Series 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 […]

Event Series 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.

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 […]

Northeast PA Support Meeting

  Support Meeting- Northeast PA Third Saturday of each Month- In-Person 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 will meet the 3rd Saturday of each month! […]