Patient & Family Program

The health and well-being of the mitochondrial disease patient community is a top concern for the United Mitochondrial Disease Foundation (UMDF).    As we continue to plan Mitochondrial Medicine 2020  for the month of June, UMDF is closely monitoring the latest information regarding the coronavirus (COVID-19) from the Centers for Disease Control (CDC).   This is a changing situation.  UMDF, in partnership with the Scientific and Medical Advisory Board (SMAB), will continue to provide updates for our community as this situation develops.

Family & Patient General Information

The United Mitochondrial Disease Foundation is delighted to invite you to Mitochondrial Medicine: 2020 in Phoenix, Arizona, USA. Whether this is your first symposium or you are a past attendee, the UMDF symposium is designed to enable you to network with many families and individuals who, like you, are seeking more information about mitochondrial disease. The UMDF symposium offers unique access to many of the top mitochondrial specialists through session presentations, Ask the Mito Doc panels, and on a one-to-one basis through the Doctor Is In forum. You will also be able to speak with our exhibitors about new products and diagnostic testing that is available.

Patients and families are given many opportunities to network with other families as well as with some of the top mitochondrial specialists from around the world. The two day patient/family program offers two tracks to meet a variety of needs – affected adults, parents, caregivers, teens, and an opening session targeted for all attendees to prep them for the entire conference. The Leber Hereditary Optic Neuropathy (LHON) Program will be available once again this year.

Please note:   Children are not permitted in the symposium sessions (unless otherwise noted).   The symposium is intended as a professional and educational weekend for adult participants. Please make other childcare arrangements.  If you need to find local childcare, we can network you with local families for potential contacts.  Thank you for your cooperation. 

(Dress during the symposium sessions is casual; you’ll be sitting a lot, so wear something comfortable! You may want to bring a light sweater or sweatshirt, as all rooms will be air conditioned. For the banquet on Friday night, suggested dress is business casual.)

The Doctor is In

pb8u8943An all-time favorite with past symposium attendees, The Doctor is In offers patients and families the opportunity to meet with some of the top specialists in mitochondrial medicine one-on-one. Hours of operation and sign-ups are provided at registration and posted in the networking room.  You must be registered to partake in the Doctor is In program. (Please note: this program does not establish a doctor-patient relationship. It is for information purposes only.)

Ask the Mito Doc Panels

Another all time favorite session of our attendees is the Ask the Mito Doc panel. We offer two panels — one dedicated to affected adults and the other for parents/caregivers of affected children. The panels consist of mitochondrial specialists who have experience with adults and/or pediatric mitochondrial patients. Questions are submitted ahead of time and some are taken from the floor depending on time.

To submit your question before the session, please submit by clicking here.


Each year, a networking room is open to all patient/family attendees and a message board is provided for folks to connect. Organizers have scheduled sessions in the Networking Room from time to time and those sessions will be noted in the registration brochure. Attendees are also seated by geographic region during the Friday lunch to help people connect with one another – it is not mandatory but most attendees take advantage of this opportunity!

Teen & Young Adult Sessions

pb8u90381As part of a grant from the Edith L. Trees Charitable Trust, the UMDF is pleased to offer FREE Teen Sessions again this year and is extending the age limit through 25 years of age. The Teen/Young Adult Sessions are intended for mitochondrial teens and/or young adults between the ages of 13-25. If an interested individual falls outside of this age range and wants to participate, please contact us at and explain your situation. Please note – a parent/guardian will need to complete the registration form for minors participating in all symposium teen activities. The sessions will be held on Friday and Saturday as noted in the schedule. Lunches and banquet celebration will be provided for a fee.

Edith L. Trees
Charitable Trust

S. Pope Babcock

Akron Children’s

BluePrint Genetics




Saol Therapeutics

Delta Gamma Foundation