All Events

  • Disorder: The Rare Disease Film Festival

    Date: October 2, 2017 - October 3, 2017

    Time: 12:00 pm to 10:00 pm

    Disorder: The Rare Disease Film Festival is a new event showcasing films from around the world which address the challenges of life with a rare disease. It will be held Oct. 3rd, 2017 in Boston, MA. Most (but not all) of our films are documentaries. Many are less than 15 minutes. Each film maker attending will have an opportunity for questions and answers with our audience following the presentation of their film. Between our slates of films rare disease researchers and patient advocates will also share stories from their experience. We believe increased awareness can connect patient families, inspire conversations about translation applications of current science, lead to new paths for research and save lives. These films put the often abstract and dire clinical information into the context of real people living their lives.

  • Kansas Walk for CURED

    Date: October 7, 2017

    Time: 8:00 am to 12:00 pm

    Campaign Urging Research for Eosinophilic Disease SAVE THE DATE CURED(Campaign Urging the Research of Eosinophilic Disease) is a not for profit foundation dedicated to those suffering from Eosinophilic Gastrointestinal Diseases (EGID). Please join us in our Family Fun Walk. Leah Rivers has started this fundraiser event I am assisting her in our endeavor along with several others as we search for a cure for our children. We will be updating the information as we get everything together. Please sign up as going or interested to receive the updates. You can find more info on CURED at curedfoundation.org We are also looking for sponsors to help with costs, donations of bottles of waters, printing of flyers, purchasing awareness materials, etc. If you have or no someone who has a business that may be willing to help please message me. We look forward to seeing you all there.

  • International Conference on Psoriasis

    Date: December 8, 2017 - December 9, 2017

    Time: 9:00 am to 12:00 pm

    The International Conference on Psoriasis during December 08-09, 2016 at Dallas, USA hosted by OMICS International Conferences. The purpose of the conference is to elucidate the disease from a number of scientific aspects. Nearly three percent of the world’s population, men, women, and children, even newborn babies, endure the symptoms of psoriasis. Many tolerate constant pain from cracking and bleeding skin.

  • Rare Giving Tuesday February 28, 2017 - February 28, 2018

    Date: February 28, 2018

    Our goal is to accelerate research to develop evidence-based therapeutics for the treatment and long-term cure for synaptic Ras-GTPase activating protein (SYNGAP1). A primary clinical challenge for SYNGAP1 patients is the management of retractable seizures. Early detection and intervention would prevent the detrimental effects of seizures that can damage neural connections and elevate symptoms that come from having SYNGAP1 mutations. Secondly, is to raise awareness of SYNGAP1 (MRD5) and unite patient families. Our goals of creating a standard of care and educating researchers/medical professionals will improve time to early diagnosis. With guidance from our scientific advisory board our goal is to creating a behavior/medical profile for clinicians. This tool will also accelerate identification of other SYNGAP1 individuals. It is crucial that an early diagnosis is made as we have seen that early therapy can be incredibly valuable to the development of our special children. Lastly, we aim to educate families and clinicians with data collected from our Natural History study to create customized treatment plans that can result in the best outcomes for progress made by each child.

  • National Autism Awareness Month - April 1, 2018

    Date: April 1, 2018 - April 30, 2018

    Event Host:

    Autism Society

    Nearly a quarter century ago, the Autism Society launched a nationwide effort to promote autism awareness, inclusion and self-determination for all, and assure that each person with ASD is provided the opportunity to achieve the highest possible quality of life. This year we want to go beyond simply promoting autism awareness to encouraging friends and collaborators to become partners in movement toward acceptance and appreciation. Let’s embrace a new perspective. For over 50 years we have worked in communities (both large and small) to ensure our actions, through our services and programming, supported all individuals living with autism. Let’s expand this work to focus on the rest of us – ensuring acceptance and inclusion in schools and communities that results in true appreciation of the unique aspects of all people. We want to get one step closer to a society where those with ASDs are truly valued for their unique talents and gifts. Join us in celebration for 2017 National Autism Awareness Month! National Autism Awareness Month represents an excellent opportunity to promote autism awareness, autism acceptance and to draw attention to the tens of thousands facing an autism diagnosis each year.

Showing Events 11-20 of 27

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