While going through a mitochondrial disease diagnosis journey, patients and families may feel confusion or sometimes panic – but you are not alone. Patient advocacy groups can be a great resource to seek answers and additional support from others who are going through similar emotions and experiences.
Beyond providing support for families who live with mitochondrial disease, patient advocacy groups can also play a key role in raising awareness. Their work may include increasing education, funding advancements in research and potentially increasing efforts toward finding treatments.
Raising Awareness
Patients with mitochondrial disease and their families often find they may need to educate their communities and, sometimes including their healthcare providers, due to a lack of awareness. As a rare disease, mitochondrial disease is not commonly encountered. It often feels like an “invisible disease,” which can prevent others from recognizing the impact it has on a patient’s day-to-day life.
Advocacy groups can help patients learn ways to manage their mitochondrial disease and may provide assistance to families who are learning to live with the disease. They may also provide educational resources for researchers and clinicians, including educational materials, research grants, and scientific conferences.
By bringing together and educating families, doctors, patients and researchers, advocacy groups can help improve understanding of mitochondrial diseases and quality of life for patients and their loved ones.
Advocacy Group Useful Resources
For patients and their families, these groups can serve as a primary resource for community support and educational services. Some advocacy groups like; UMDF, MitoAction, NORD, Barth Syndrome Foundation (BSF), Miracles For Mito and LHON.org have curated resources and information on coping with a diagnosis and ways to get connected with the mito community:
- UMDF Mitochondrial Resource Guide Online: from diet and nutrition resources to adaptive equipment, this is a compilation of information and resources to help you care for yourself and/or your family member.
- Top MitoAction Support Resources: weekly teleconferences, podcasts and one-to-one support are a few of the helpful resources MitoAction has listed.
- BSF Family Services: you can find fact sheets, growth charts, tools for school and educational videos thanks to BSF volunteers.
- LHON.org: a list of podcasts and general resources for the blind or for those with limited eye sight.
- NORD’s Patient and Caregiver Resource Center: materials to guide you on your journey with a rare disease like free webinars, fact sheets, infographics and more.
Making Connections
While every diagnostic journey is different, advocacy groups can give patients and their families an opportunity to share, learn and connect with others in the mito community.
One of the quickest ways to join a support group is on social media. Some advocacy groups also have Facebook groups that serve as a closed forum where members of the mito community can post questions and share their experiences.
Advocacy groups also often have calendars for both in-person and virtual activities where patients, caregivers or those interested in mitochondrial diseases can connect. Further, connecting with others at local fundraising events and conferences is a great way to get involved and build your support network.
Getting Involved
The communities and organizations taking charge against mitochondrial disease are driven by the patients, caregivers and advocates themselves. Patient advocates power the community and can play a key role in supporting the patient community.
Want to share your mitochondrial disease diagnosis journey and increase awareness within the community? Contact us on our Facebook page or at [email protected].
Learn more about some advocacy groups and organizations dedicated to mitochondrial diseases.
