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Found 4 results

  1. 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
  2. Do you have a passion for educating, encouraging, and writing about dysautonomia? Would you like to give back to the dysautonomia community by writing for DINET? We would love to hear from you! DINET's volunteer needs are always changing, but here we always have a need for newsletter writers. If you would like to see the type of articles we include in our newsletter, look at a recent newsletter: http://dinet.org/ind...ces/newsletters If you would like to volunteer for DINET, please email Janie at Janie@dinet.org Thank you!
  3. DINET is adding a new regular column to our quarterly newsletter: The Parenting Corner. This column will focus parenting when either you, your spouse, or one of your children has dysautonomia. We need someone to head up this column. This person may want to write about their own experiences as a parent dealing with dysautonomia, but this new writer may also want to use the forum to get ideas and/or suggestions from other DINET members about their parenting experiences and advice. Topics could include ideas such as "Going Back to School," "Helping with Homework," "IEPs and Other School Resources," or "Caring for an Infant While Struggling with Dysautonomia." We are aiming to publish our newsletter quarterly, so this writer will need to be willing to submit a new article every few months. We also need someone who has good grammar and spelling skills. I'm super excited about this column since I'm in the midst of raising our 15-month-old and can totally related to these challenges! If you are interested in heading up this column, please email me at Janie@dinet.org
  4. We need someone to take over Staci's role as DINET Newsletter Designer. We currently publish our online newsletter quarterly. The Newsletter Designer would be responsible for coordinating with the newsletter columnists, editing, layout and maintaining the professional look of our DINET newsletter. We are looking for a person who has design layout experience, specifically with Adobe CS5 or at least with InDesign CS3, as well as Adobe Acrobat Pro. If you are interested in volunteering as our Newsletter Designer, please email 2 or 3 samples of relevant work to j_farrens@hotmail.com
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