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SUMMARY:RARE DISEASE Day Event in Australia: First Light Celebrations with 22q Foundation Australia & New Zealand
DESCRIPTION:Friday\, February 28th and Saturday\, 01 March (February 28th RARE Disease Day in USA) \n22q Foundation Australia & New Zealand \nRare Disease Day \n-Imagine more: how you can shape the future of rare disease & 22q Foundation Australia & New Zealand \n\n\nJoin us for a special day dedicated to celebrating and empowering the rare disease community! This family-friendly event brings together individuals living with rare diseases\, their families\, and the wider community to connect\, share\, and inspire. \nRare Diseases NSW hosts regular events for the rare disease community\, health professionals and researchers.\nThis year Rare Diseases NSW will be hosting 2 days of special events to mark Rare Disease Day 2025 on Friday 28th February and Saturday 1st March.\nClick here to view the program for both days and see below to RSVP. \nAn Easy Read program is available.\n   \n\n\n\n\nClinical Day: How You Can Shape the Future of Rare Disease\n\n\n\n\n\n\nJoin us for a special clinical education day to celebrate International Rare Disease Day on Friday 28th February at Sydney Children’s Hospital\, Randwick. \nResearchers\, clinicians and service providers at the cutting edge of rare disease care will share their insights. \nYou will also hear from award-winning photographer Rick Guidotti\, founder of Positive Exposure. This organisation celebrates the richness of human diversity\, aiming to change attitudes towards individuals living with genetic\, physical\, behavioural or intellectual difference. \nDate: Friday 28th February\nTime: 12-4pm\nLocation: Sydney Children’s Hospital Lecture Theatre\, High St\, Randwick NSW 2031 \n\n\n\n\nImagine More: How You Can Shape the Future of Rare Disease\n\n\n\n\n\n\nThis family-friendly event on Saturday 1st March to mark International Rare Disease Day brings together people living with a rare disease\, health professionals\, and the wider community to connect\, share\, and inspire. \nThere will be fun activities for kids\, plus it is FREE OF CHARGE! \nThis event is a collaboration between Rare Diseases NSW\, UNSW Sydney\, the Sydney Children’s Hospital Network\, and the 22q Foundation Australia & New Zealand. \nDate: Saturday 1st March\nTime: 10am – 4pm\nLocation: Sydney Children’s Hospital Lecture Theatre\, High St\, Randwick NSW 2031
URL:https://positiveexposure.org/event/rare-disease-day-event-in-australia-first-light-celebrations/
CATEGORIES:Exhibitions,Lectures & Presentations,Photography and Film
ATTACH;FMTTYPE=image/jpeg:https://files.positiveexposure.org/wp-content/uploads/2025/01/07225036/RDD-25-3.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20250307T170000
DTEND;TZID=America/Los_Angeles:20250307T190000
DTSTAMP:20250127T195213Z
CREATED:20250127T194703Z
LAST-MODIFIED:20250127T195213Z
UID:41739-1741366800-1741374000@positiveexposure.org
SUMMARY:The Council of Parent Attorneys and Advocates\, Inc. (COPAA)
DESCRIPTION:Creating Opportunities. Protecting Rights. Changing Lives.\nCOPAA’s mission is to protect and enforce the legal and civil rights of students with disabilities and their families. Our primary goal is to empower marginalized community members to secure high quality educational services and to promote excellence in advocacy. \nIrvine Marriott: Irvine\, CA
URL:https://positiveexposure.org/event/the-council-of-parent-attorneys-and-advocates-inc-copaa/
CATEGORIES:Lectures & Presentations,Photography and Film
ATTACH;FMTTYPE=image/jpeg:https://files.positiveexposure.org/wp-content/uploads/2025/01/07225035/Screenshot-2025-01-27-at-2.43.36%E2%80%AFPM.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250312T190000
DTEND;TZID=America/New_York:20250312T203000
DTSTAMP:20250304T221551Z
CREATED:20250218T175218Z
LAST-MODIFIED:20250304T221551Z
UID:41809-1741806000-1741811400@positiveexposure.org
SUMMARY:FILM SCREENING: We Have a Voice & You Made Me Want to Smile Again
DESCRIPTION:We Have a Voice\nYou Made Me Want to Smile Again\nTwo short films about adults living with I/DD and the healthcare professionals who champion them. \nVirtual Screening and Q&A\nWednesday\, March 12 at 7 pm EST\n \n  \nFeaturing Dr. Dian Chin Kit-Wells\, President of the AADMD (American Academy of Medicine and Dentistry)\, and Paris Adams\, the AADMD Self Advocate of the Quarter. \n61 million US adults have some type of disability\, of which approximately 4.92 million individuals live with I/DD. Nearly half a million children with special healthcare needs become adults each year\, thereby leading to an increased number of adolescents and young adults moving from a child-centered medical system to a fractured\, adult healthcare world. \nIndividuals with I/DD are living longer than any such adults in prior generations. Lifelong developmental disability often requires various support needs\, especially with associated behavioral challenges\, communication limitations and complex health issues. It is therefore imperative that training for PCPs and health care providers in training is contextualized with the images and voices of the very community they need to serve. \nIndividuals with I/DD need to be presented in a positive\, person-centered way to the receiving end of the of the adult healthcare community\, so that they can both learn about the various conditions of their potential patients and see the human side; not just the diagnosis. \nAccording to Meelin Dian Chin Kit-Wells DDS\, Clinical Assistant Professor at Buffalo\, AADMD President: \n“It is so important to prioritize & prepare primary care clinicians (& clinicians-in-training) to care for our aging population of individuals with I/DD in communities of color. Far too many individuals experience misguided trust\, distrust\, closed doors to care\, elder neglect\, ageist attitudes\, ableism\, racism & discrimination which further widens the gap. The relationship with the provider is crucial. It should be natural. And many\, especially as we age\, find it easier to communicate with providers that have grown up in their community\, that may know the family or a family like theirs.” \n  \nThese films were made in collaboration with the AADMD\, and were made possible with the generous support of the WITH Foundation and the Robert Wood Johnson Foundation. \nImage Description: On a black background is the following text: “Positive Exposure Film Screening. Wednesday\, March 12\, 7pm EST. We Have a Voice Engelic and Paris\, Aging Adults Living with I/DD\, Share Their Stories with You Featuring AADMD’s Self Advocate of the Quarter\, Paris Adams. Screening Virtually. You Made Me Want to Smile Again. Our Healthcare Champions Devoted to Aging I/DD Communities of Color.” The poster contains two images; The first is a close-up portrait of a man wearing a blue shirt\, sunglasses\, and a black hat beside a woman wearing tinted glasses\, bright yellow earrings\, and a white baseball cap. Below is a still image of a woman seated on a couch\, smiling brightly and lifting her pointer finger.
URL:https://positiveexposure.org/event/wehaveavoice/
LOCATION:Virtual
CATEGORIES:Photography and Film
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DTSTART;TZID=America/New_York:20250315T080000
DTEND;TZID=America/New_York:20250315T170000
DTSTAMP:20250306T215600Z
CREATED:20250306T215600Z
LAST-MODIFIED:20250306T215600Z
UID:41871-1742025600-1742058000@positiveexposure.org
SUMMARY:Dyne Therapeutics\,
DESCRIPTION:RARE Disease Day Celebration with DYNE Therapeutics: Photography\, Lecture and Digital Exhibition!\nTrailblazing the development of\nmuscle-targeted therapies to stop or reverse disease progression—\nDyne Therapeutics is building a leading muscle disease company focused on advancing innovative life-transforming therapeutics for people living with genetically driven diseases.
URL:https://positiveexposure.org/event/dyne-therapeutics/
CATEGORIES:Exhibitions,Lectures & Presentations,Photography and Film
ATTACH;FMTTYPE=image/png:https://files.positiveexposure.org/wp-content/uploads/2025/03/07225021/Screenshot-2025-03-06-at-4.54.17%E2%80%AFPM.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250328T110000
DTEND;TZID=America/New_York:20250328T120000
DTSTAMP:20250328T154732Z
CREATED:20250328T154625Z
LAST-MODIFIED:20250328T154732Z
UID:42268-1743159600-1743163200@positiveexposure.org
SUMMARY:Loma Linda  University Health: Women's Medical Retreat
DESCRIPTION:Positive Exposure presentation: \nSponsored by WiM4U\, a Women in Medicine network at Loma Linda University School of Medicine
URL:https://positiveexposure.org/event/loma-linda-womens-medical-retreat/
CATEGORIES:Lectures & Presentations
ATTACH;FMTTYPE=image/png:https://files.positiveexposure.org/wp-content/uploads/2025/03/07224451/Screenshot-2025-03-28-at-11.42.43%E2%80%AFAM.png
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