Allied Organizations

Meet our Coalition Members

Convening Organization

United Mitochondrial Disease Foundation (UMDF)

UMDF collaborates to support and empower mitochondrial disease patients and families, drive awareness, mobilize advocacy, improve access to diagnosis and quality care, and accelerate breakthroughs in treatments and cures.

umdf.org

Member Organizations

16 organizations

ADOA Association

ADOA Association’s mission is to help every family living with ADOA find the answers they are looking for and to join together to ultimately help fund the medical research for a cure.

adoaa.org

ATAD3A Patient Advocacy Alliance

The ATAD3A Patient Advocacy Alliance is committed to improving the lives of individuals affected by ATAD3A gene-related disorders, including Harel-Yoon syndrome.

atad3a.org

Barth Syndrome Foundation

Barth Syndrome Foundation collectively and tenaciously works toward saving and improving the lives of those impacted by Barth syndrome, an ultra-rare, life-threatening genetic disorder.

barthsyndrome.org

Cure LBSL

Cure LBSL funds research and offers support and information to Leukoencephalopathy with Brainstem and Spinal Cord Involvement and Lactate Elevation patients and families.

curelbsl.org

Cure Mito Foundation

Cure Mito Foundation’s mission is to unite the global Leigh syndrome community to accelerate patient-centered research, treatments, and cures.

curemito.org

CureARS

CureARS’ mission is to spread awareness, connect and provide support to affected families and fund research for the ultra-rare mitochondrial ARS genes in order to pave the way to suitable treatment options and ultimately a cure.

curears.org

Friedreich’s Ataxia Research Alliance (FARA)

The Friedreich’s Ataxia Research Alliance (FARA) is a 501(c)(3) nonprofit dedicated to curing Friedreich’s ataxia by funding research, supporting clinical trials, and empowering a global FA community.

curefa.org

Heart of PPA2

Heart of PPA2’s mission is to bring together families, caregivers, and others facing similar paths from around the world to raise awareness, inspire research, and advocate for better understanding of rare conditions.

heartofppa2.org

Hope for PDCD Foundation

Hope for PDCD Foundation’s mission is simple: to find a cure for PDCD. Genetic medicine, combined with standards of care, small molecule therapy, and early diagnosis, will give them a fighting chance. Our work will help advance research for AAV9 genetic medicine, which is currently the best hope for PDCD and other neurodegenerative diseases.

hopeforpdcd.org

Jeremiah Gracen TK2d Foundation

The focus of The Jeremiah Gracen TK2d Foundation is to raise awareness, promote education and to be a liaison for family support services of those affected by Tk2d (thymidine kinase 2 deficiency) globally.

tk2dfoundation.org

LHON Collective

LHON Collective is a global initiative dedicated to accelerating progress toward a cure for Leber Hereditary Optic Neuropathy (LHON) while improving the lives of people living with LHON.

lhon.org

MitoAction

MitoAction’s mission is to improve the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, clinical research initiatives and by granting wishes for children affected by mitochondrial disease.

mitoaction.org