You are not alone and there are many who wish to help. The following are a number of links to foundations or services that can be of help. Please check them out and please contact us if you think something should be added.
MitoAction - www.mitoaction.org
MitoAction's mission is to improve the quality of life for all who are affected by mitochondrial disorders through support, education, and advocacy initiatives.
To do this, MitoAction's goals include:
- To improve the quality of life for adults and children affected by mitochondrial disease.
- To internationally raise awareness about mitochondrial disorders, and their relationship to other diseases.
- To provide specific and practical materials that help patients to manage their symptoms
- To aggregate and connect the international mitochondrial disease community
- To engage the pharmaceutical industry in working toward therapeutic approaches to mitochondrial disorders.
- To create tools that empower patients and caregivers to be advocates for themselves or their children.
All are welcome and encouraged to join MitoAction. Membership is FREE.
Georgia Ehlers-Danlos Syndrome Support Group - www.chronicpainpartners.com/north-atlanta-eds-support-group
Georgia Ehlers-Danlos Syndrome Support Group's goal is to provide regular social support and information to all EDSers and persons with Hypermobility Spectrum Disorders, their caregivers, and friends throughout the state of Georgia.
United Mitochondrial Disease Foundation - www.umdf.org
To promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.
- Patient and Family Support
- Research
- Information and Communications
The Ehlers-Danlos Society - www.ehlers-danlos.com
The Ehlers-Danlos Society is a global community of patients, caregivers, health care professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions.
Mito Chat Room - health.groups.yahoo.com/group/mito
As with anything on the internet, there will be extremes but this area can offer a place to discuss, support, share, and gain information.
Help Mito Kids - www.helpmitokids.org
The purpose of this non-profit organization is not only to help spread awareness about Mitochondrial Disease but to support those families who have been burdened by medical hardship. At least two-thirds of every donation will go toward medical costs and medical-related travel costs not covered by insurance. One-third will go toward research for Mitochondrial disease.
GiveForward - www.giveforward.com
GiveForward's online fundraising pages empower friends and family to send love and financial support to patients navigating a medical crisis. Start a GiveForward page today to ease the burden of your loved one's out-of-pocket medical bills.
- Easy to Use: In less than 10 minutes you can set up a GiveForward page and start collecting funds from friends and family around the country.
- Hope: More than just a way to contribute financially to loved ones in need, GiveForward pages allow friends and family to leave words of encouragement and build a community of emotional support.
- Empowerment: GiveForward empowers friends and family by giving them an answer to the question "What can I do to help?"