Aurinia Pharmaceuticals Inc.’s Post

Because 20th century treatments available to the rare community allowed survival into adulthood, the next generation of 21st century rare adults ages 18-40 need resources to thrive. And those rare adults that enter the milestone of 40+ need space in their unique challenges in aging. Next Generation of Cystinosis wants our peers involved in their reality. Are you an adult living with cystinosis? Are you a self-starter with a passion for advocacy and creating platforms for your peers? NGC is currently in a rebuilding phase and is looking for cystinosis adults with writing, digital media, and editing skills, networking skills and financial skills in our leadership to make changes in rare spaces now. Are you a cystinosis adult and want to volunteer because you are interested in framing the resources you need? **Next Generation of Cystinosis seeks to be a board comprised of 60% adults living with cystinosis and 40% non cystinosis adults, if you have the above interest and/or skills but do not live with cystinosis in your body you may be considered on the basis of the 60 to 40 ratio** Please contact current president Tahnie Woodward : tahnie@gmail.com #ActiveAdvocacy #AdultsLivingRare #CenteringRareVoices #Cystinosis #NextGenerationCystinosis #NextGenCystinosis #ReimagineRare #VolunteersForRare [ID: the graphic below is a white background with the following announcement in capital black lettering: WE ARE LOOKING FOR NEW BOARD MEMBERS NEXT GENERATION OF CYSTINOSIS]

At GN Pal Molecules, we're dedicated to dispelling misconceptions about vitiligo. This autoimmune condition, which affects skin pigmentation, is not contagious. We invite you to join us in educating others and challenging stigma with compassion and facts. Your voice is crucial in fostering a more understanding society. Together, we can promote acceptance and support for individuals with vitiligo, paving hashtag #ANewWayForANewWorld. By spreading awareness and embracing diversity, we're not just changing perceptions - we're transforming lives. Join GN Pal Molecules in this important mission to create a more inclusive and informed community. #EmbraceYourCanvas #Inclusion #VitiligoAwareness

What is human dignity? How should the Christian respond when it is disgraced? Today, Peter Saunders of ICMDA outlines principles of engagement through dialogue and advocacy.

📰Jeffrey Klausner, MD, Awarded Funding from Open Philanthropy Towards Improving Sexual and Reproductive Health in Low-Resource Settings 💡Over the last 2 years, Klausner, has received four gifts from Open Philanthropy towards his research on the prevention and control of infectious diseases centering on sexual and reproductive health in low- and middle- income countries. 🌎With the ongoing global syphilis crisis, Klausner has dedicated his research towards interventions that have a practical and direct application to communities with the greatest need. 🤰Klausner’s first gift from Open Philanthropy was devoted towards gaining a better understanding of why STI infections lead to poor birthing outcomes; research that is crucial to advancing knowledge to inform better diagnostic tests to prevent preterm birth delivery. 🔍The second gift was dedicated towards the control and prevention of syphilis in low resource settings. By conducting research in underrepresented regions of the world, Klausner is promoting health equity by ensuring global representation in research. ✅ Read more about his research mission and his dedication to building the evidence base to address health challenges and improve health care in low-resource settings. #USC #publichealth #populationhealth #graduateprogram #faculty #research #syphilis #pretermbirth #maternalhealth https://lnkd.in/g7B_5SFP

May is #LupusAwarenessMonth. #DYK although men, teens, and children can develop lupus, 90% of individuals living with lupus are adult women. Join our team in raising awareness & the global effort to #MakeLupusVisible!

"📣💚👶🏾NEWS COVERAGE ALERT We secured coverage for our client on California’s Spectrum News “In Focus SoCal” show! The feature highlights the incredible work of Sankofa Birthworkers Collective, a partner of our client Perinatal Equity Initiative (PEI). PEI is a community-driven and implemented initiative designed to address racial disparities in infant mortality by providing meaningful support and resources to Black families. One way they do this is by complementing Sankofa Birthworkers Collective’s FREE programs and direct doula services for Black birthing families. Pitching to the Media When pitching a story, Nice focuses on: 1. Highlighting what makes the client’s story unique. 2. Centering personal stories and community impact. 3. Tailoring pitches based on the journalist’s previous work and interests. Pitching to the media is an important skill to have in your communications strategy. Let us help you gain media coverage for an upcoming event or initiative. Visit Nicemediagroup.com to learn more! #SankofaBirthworkersCollective #InFocusSoCal #SpectrumNews #Birthworkers #BlackBirthingFamilies #Community #PEI #BlackInfantHealth #maternalhealth #RiversideCounty #SanBernardinoCounty #mediapitching #publicrelations

In a recent conversation with colleagues about the barriers faced by people with disabilities in accessing research, my thoughts turned to my incredible Nan, whose life continues to guide my approach to health and care. Diagnosed with Retinitis Pigmentosa at just 13 in 1938, she lived with a degenerative genetic eye disease for most of her life. Despite the daily challenges, she worked numerous jobs, was an outstanding baker, loved and cared for a family she raised and all with remarkable independence. Her story is a powerful reminder of the importance of engaging diverse populations and making health and care more inclusive. Caring for her from a young age taught me invaluable lessons in compassion, patience, and empathy—qualities that are essential in both personal and professional life. It also highlighted the need to take research opportunities to those in hard-to-reach communities, ensuring that everyone, regardless of their circumstances, has the chance to contribute to and benefit from health advancements. My Nan’s experience, where simple tasks like pouring a cup of tea were made difficult by her condition, underscores the impact of accessibility and inclusion. Watching her navigate a world not designed for her needs made me realise how much more we can do to ensure that no one is left behind in the pursuit of better health and care outcomes. This drives my passion for advocating for equality and diversity. Her photo sits on my home desk and is a reminder daily of my purpose. Who inspires you for better? #InclusiveResearch #HealthEquity #PatientAdvocacy #CompassionInCare #EngagingCommunities #DiversityInHealth #AccessibilityMatters #InspiringBetter #Inspiration #Blindness #RetinitisPigmentosa #StrongWomen

🩺🌸 Today is the International Day of Action for Women’s Health! 🌸🩺 Women’s health is a fundamental human right, and it's time to take action! From access to sexual and reproductive health services to mental health support and ending gender-based violence, we must prioritize women's health and well-being! 👉 Take action today: Share this post and spread the word. Support organizations working on women's health. Educate yourself and others about women's health rights. Together, we can make a difference! 💜

For decades, the nutritional needs of women and girls have been largely overlooked in global and national investments, putting the lives of millions at risk. Our Director of Global Advocacy, Robyn Bright, explores five promising indicators of progress that have the potential to build a brighter world and improve the health, well-being and life trajectories of women and girls, both now and for generations to come. https://lnkd.in/gmiN6Kit

What is the #postnatal period? What might women experience during the postnatal period? What is meant by a “positive postnatal experience”? HRP Research and the World Health Organization just published an advocacy brief on supporting women, parents and families for a positive postnatal experience. This advocacy brief complements both the WHO postnatal care recommendations (https://bit.ly/43K0RdO) and this year's series of six articles on positive postnatal care published in BMJ Global Health (https://bit.ly/3UXAEpB).  This advocacy brief communicates the importance of postnatal care for the entire family, goes over frequently asked questions and can support and strengthen advocacy messages.