We work closely with key advocacy organizations as well as many smaller regional patient groups, to support their respective missions.
The rare occurrence of inherited mitochondrial disease means that people whose lives are affected may have less access to information, support and resources than are otherwise available for a variety of common health conditions. These organizations play a vital role in helping patients, families and caregivers navigate the difficult path from diagnosis to living with a disease that is often misunderstood.
We work closely with patient advocacy organizations and those they serve to better understand the needs of people whose lives are impacted by diseases in which mitochondria play a key role, especially those who suffer from rare disorders with no FDA-approved treatments. Their experience and feedback help guide our research efforts from trial design to enrollment to informational materials, as we pursue treatment options that have the potential to change the course of their diseases.
To help us understand the treatment needs of this population, we collaborate with leading mitochondrial disease organizations whose missions are aligned with ours:
Foundation for Mitochondrial Medicine: www.mitochondrialdiseases.org
Friedreich’s Ataxia Research Alliance: www.curefa.org
Leber’s Hereditary Optic Neuropathy: www.lhon.org
United Mitochondrial Disease Foundation: www.umdf.org
Our support for our advocacy partners also includes assisting them with providing educational resources for patients and their families. These efforts include patient-focused seminars and conferences that give access to expert opinions and information on a variety of topics relevant to living with a rare disease. We also develop and provide material that helps to demystify the biological complexities of mitochondrial disease and its effect on the human body.
What do your mitochondria do for you?
Flip through our booklet to understand how mitochondria create the energy you need to function.