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Found 2 results

  1. #GivingTuesday is an international day that was started to bring attention to nonprofits and their causes; an international day of charitable giving. DINET relies on donations, big and small and all are important and greatly appreciated. But just as important to DINET's effectiveness are the stories that we all share about our journey, our experiences with this disorder and the people who help us along the way. In honor of #GivingTuesday, please share a story about how DINET or a person you met through DINET has helped you along the way. I will start with mine. When it was first suggested that I may have something called "autonomic dysfunction", I began searching for anything that I could find on the subject. That was my introduction to DINET and many other organizations with a LOT of medical information. I was frightened, very ill and very overwhelmed. I read, printed, memorized and shared the information from all of the sites. I was now well informed but still just as frightened, ill and overwhelmed. And then something changed. I sent an email to DINET asking a question about information found on the site. I expected to wait a while and then receive a followup email with links to more information or a medical answer to my question. What I received was a personal email from a DINET volunteer. Her email gave me the medical answer and links that I needed and so much more. At a time when I was being shuffled from one lab test to another, one appointment after another, I frequently wondered if anyone remembered my name. But this DINET volunteer took the time to share some of the common experiences dysautonomia patients have. She wrote me and asked questions about how I was managing. She encouraged me to join the forum and to continue to reach out to other people sharing similar experiences. Through the forum and discussions with other members, I was no longer isolated and I was better understood. It was that personal one-on-one communication that I so badly needed and that made all the difference to me. I joined the forum and sometimes just reading something that someone else wrote was enough to help ease my own struggle. I became a volunteer for DINET not long after joining and I try to be that "voice" on the other side of the email or message whenever I have the opportunity. As important as the knowledge and education offered has been to managing my illness, I will be forever grateful for the personal touch and experiences shared by the volunteers and DINET members. That's my story...now it's your turn. ******************************************************************** Ways to donate - https://www.paypal.com/us/fundraiser/charity/1552351 shop - smile.amazon.com (select Dysautonomia Information Network) or check out the many other ways - https://www.paypal.com/us/fundraiser/charity/1552351
  2. We can't stand without support. We can't do it as individuals. We certainly can't do it as people with dysautonomia. And we can't do it as an organization. We all need each other's help. But there are so many worthwhile organizations, so many places needing help - why help DINET? DINET is a validated, certified 501(c)(3) nonprofit organization. Guide Star, the world's largest source of information on nonprofits awarded DINET the Silver Seal of Transparency. Vetting DINET as an organization providing the public full access to its financial filings and managerial platform. Volunteers moderate the forum - to guarantee patients a protected place to have discussion anonymously about your health and your experiences; to share your concerns, ask questions and be supported by a community of people who understand. DINET goes where the work is needed. DINET belongs to the Rare Diseases Clinical Research Network working within their Autonomic Disorders Consortium. Why should you care? Because it gives you access to the information that is at our fingertips - literally. New research and recruiting studies are published on our homepage as they become available. DINET is also a member of the Coalition of Patient Advocacy Groups. Chelsea Goldstein, one of DINET's Board of Directors will be attending the annual meeting in June to discuss ways to incorporate the patient's voice into the research process, as well as other issues related to the translation of clinical research to real life patient settings. The 2017 Survey, along with the ongoing Surveys on Facebook, give our readers another way to have their voice heard. DINET continues to support workshops and information sessions across the world with materials, videos, and in-person talks (when possible). Most recently, DINET provided educational materials about dysautonomia and POTS for two health workshops about invisible illness in North Carolina. An in-person presentation at a NH Hospital is scheduled for late May. The more we increase awareness, the shorter the time to diagnosis and the better the treatments of the illness will be. We post information about living with chronic illness, latest news and discoveries about dysautonomia and related disorders on our site and daily on Facebook. Volunteers personally answer every email we receive with the best answers we can find - on our site and through other organizations. We care...truly. We are patients & caretakers and the information we gather, the connections we make and the support we provide is just as important to our health as it is to yours. We are a 100% volunteer organization - every one of us. We give our time, our energy (between naps) to do this because we really do care and we want to help. If you would like to help DINET continue to stand, please consider making a donation and/or volunteering. or email webmaster@dinet.org with questions. Return to newsletter
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