Without the NADF and its volunteers I'm not sure where I'd be. I've gotten valuable information that I was able to discuss with my doctor that made my every day life better.
The NADF is a support system for all. The NADF gives their volunteers the tools to help those looking for information whether they be new to adrenal disease, had it for some time, suspecting adrenal disease and the family/support of each of these.
The NADF is a great support system for both the person with adrenal disease and their support system.
I am a Volunteer and Support Group Leader for the NADF. Prior to becoming a volunteer, I turned to their website for guidance when I was diagnosed. I cannot count how many times the information they have made available has helped save my life. I made an "Emergency Binder" full of printouts from their website. I take this to doctor appointments and hospital visits. It has been very beneficial in the Emergency Room where most have never really heard of or studied adrenal issues other than the short amount of time it was covered in medical school. I learned quickly that not only do I need to help educate my family and friends, my own physicians and I were learning together about the disease. There is always something new to learn and no two patients are exactly alike. Once I felt I had a good understanding myself, I asked the NADF how I could help and advocate for them and adrenal diseases awareness. They have been great at giving me support from the very beginning and now as a volunteer, to continue to educate me so that we can try to help and support others as well. I now hold quarterly support meetings in my state.
I have both been served by this non profit and have volunteered for NADF. As someone with Addison's Disease, which is a rare illness, they have helped me so much. They provided all the information and answers I could possibly need in a timely manner. It was my pleasure to volunteer for them and only stopped because of family illness. They treat everyone with the utmost respect and confidentiality, and go above and beyond to make sure they give them the most accurate and useful information on the disease, tools and referral information. Their doctor referral database has been so helpful to so many people!
Helpful and courageous folks willing to share there resources of knowledge and allow for free sharing within private FB support groups for going deeper into the realities of our condition. Receiving support and encouragement and at times warning and rebukes. A true community online has formed as an off shoot, humbling experiences
NADF has provided a valuable resource with information for adrenal disease patients. Their information has saved lives, including mine, by providing information, research, and resources for patients to find a path to disgnosis and treatment. If their information hadn't been available, I may not be alive. The NADF works hard to communicate accurate and current medical research to patients and doctors to provide a continuous support system, and maintains support groups nationwide so none of us with "rare" adrenal diseases feel alone.
NADF does a tireless job of educating the medical community of a disease that is classified as "rare" when it is increasingly becoming more common. I grateful for their support locally and Nationally. They do a great job!
NADF sends a monthly, informative, email to members. When I was diagnosed with adrenal deficiency 30 years ago, my doctor suggested I receive their newsletter. I have learned many things through NADF that past doctors never discussed with me. This organization has been extremely valuable to me.
There are so few good resources for Addison's Disease but this group is invaluable. Addison's is considered rare so patients are dying because their disease is not recognized and diagnosed. This group is spearheading the push to educate the medical industry and public about Addison's. It keeps the sufferers and families up to date on any research or changes in techniques in the treatment of Addison's. Again,This group is invaluable
A few years ago a family member was diagnosed with Addison’s disease, rare diseases of adrenal glands caused by autoimmunity. This chronic and life threatening disease has to be properly treated at all times, special precautions have to be taken during any other medical problems or emergencies. NADF gave me much needed emotional support and information which was presented from a point of view of a patient. Since all material provided by NADF is written or verified by a Medical Advisor I know I can trust it. I was so thankful I found NADF and decided to volunteer and help this small yet very productive organization to continue its patient advocacy work. Thank you NADF and all your volunteers for the amazing work you are doing!
NADF gives us tools and information that save lives. For the first time in my life, I was able to meet others with my disease (Isolated Central Adrenal Insufficiency), and to compare notes with them. We are even planning a research project together. Hopefully, our study will benefit many others with our disease.
NADF has given to us without any profit motive what so ever. After a bad experience I had with a different pituitary disease organization/network, I am relieved to find people I can trust.
I learned I have a rare illness called Adrenal Insufficiency. NADF has been amazing taking my calls and sending me information. I was so impressed I joined them and became a support group leader for NADF in Kansas City!
They are so supportive. Along with all the vital information they provide, they also have local support groups run by volunteers. NADF is a wonderful organization!
I called NADF looking for a support group. While they didn't have one in my area, I immediately took on the role of Support Group Leader in my area. NADF sends out life-saving information. I am so much more knowledgeable about my disease since joining NADF, and I'm able to help others and support others. The Executive Director and the President of NADF are the most caring, compassionate, and trustworthy people you'll ever meet.
Review from Guidestar
After having Addison's Disease for 3 years, I decided I needed some support. I contacted NADF, and I ended up starting a New England-based support group for people with Addison's Disease. It was the first time I met other people with Addison's. Everyone is so helpful. I've gotten more common sense advice on taking care of myself than I did through my regular endocrinologist.