EURORDIS-Rare Diseases Europe’s Post

EURORDIS-Rare Diseases Europe is gathering information for the #RareBarometer in order to understand the impacts of living with a rare disease on daily life. The survey focuses on: ▶️ Estimate levels of social participation and identify factors influencing engagement in activities such as school, leisure, and work. ▶️ Understand preferences and needs related to independent living. ▶️ Collect experiences with disability assessment processes. ▶️ Identify key barriers and facilitators to accessing social and disability rights. The data from the Rare Barometer will enable EURORDIS and its members to design effective advocacy strategies and actions to reduce social vulnerability. From today until September 8, this global survey is available in 25 languages, and open to all individuals living with a rare disease and their family members. It's time to share your story! 🌍 https://lnkd.in/g_Di3Dvm #RareDiseases #RareBarometer #EurordisSurvey #AdvocacyForRarePatients

The Global Disability Summit 2025 will be held in Berlin on April 2-31. Here are some excellent topics related to elderly disabled persons that you could consider discussing: Aging with Dignity: Addressing the unique challenges faced by elderly disabled individuals in maintaining their dignity and independence. Healthcare Accessibility: Ensuring that healthcare services are accessible and tailored to the needs of elderly disabled persons. Social Inclusion: Strategies to combat social isolation and promote community engagement among elderly disabled individuals. Technology and Innovation: Exploring how assistive technologies can improve the quality of life for elderly disabled persons. Policy and Advocacy: Discussing the importance of policies that protect the rights and well-being of elderly disabled individuals. Caregiver Support: Providing support and resources for caregivers of elderly disabled persons. Mental Health: Addressing mental health issues and providing psychological support for elderly disabled individuals. These topics can help foster meaningful discussions and drive positive change for elderly disabled persons.

Today, December 3rd, is International Disability Awareness Day. It’s estimated that close to 1 billion people in the world manage a disability, which is about 15 percent of the population, making this group the world’s largest minority. A very large portion of this population, some estimate over 90 percent, are managing an INVISIBLE disability. These include chronic disease and mental illness, among others. I am a member of this population. Over the last few years, I have shared much more openly about my condition that causes chronic physical pain. Through sharing, I have gained support and understanding. But, as a leader, I’ve learned that sharing at my level is SO important, to create an inclusive environment for all of our people. There is POWER in self-identifying as someone who is successful and also manages disability and I would argue, it is inherent to #servantleadership. When I share, it is not to garner sympathy. I like to share things that have worked for me to help manage my pain. I share continued physical exercise routines which I am amazingly proud of. It’s very empowering. I share my mindset and how I must actively manage it to persist during times of stress so that my body won’t fail me. In turn, others that suffer with invisible disabilities have shared with me their own stories of physical and mental #resilience. I’ve gotten reach outs from so many at #EY about how they wished more leaders would share openly, giving inspiration to all that are working as hard as they can, to deliver excellence and make a significant impact despite their #disability. If you struggle with an invisible disability, I would encourage you to consider the value to be gained for yourself and others you work with, through sharing. #InternationalDisabilityAwarenessDay #disabilityinclusion #invisibledisability

35% off LAUNCH SPECIAL Sign up and purchase your booth in local and regional halls or nationally -Be interviewed, share your content and show your skills -Help us build this first of it’s kind platform -Connect with thousands of people -Get behind this amazing initiative and become a sponsor The search for service options never stops. People around Australia continue to look for what’s on in their region, what services are available and now this can be done from the comfort of your home, 24 hours a day, 7 days a week. People can visit the Disability Connection Virtual Expo today and connect with services, advocates, watch updates and content, find out what is on and earn points to be part of our monthly prize draws. There are over 4.4 Million people living with disability in Australia and tens of thousands of service providers, allied health professionals, advocacy groups and supports. People still cannot always find the right information and services where they need them, when they need them. People in rural areas and our outback face even greater difficulty. This is why we wanted to provide a way for people to connect with NDIS and mainstream health services, advocate groups and community options nation-wide. Be part of our launch and join a hall in your area as we grow and expand regionally with your support. By people with disability for people with disability and providers. Purchase you booth today here https://lnkd.in/gnRPjiSN Check out our Virtual Expo Exhibiter and Sponsor kit here https://lnkd.in/gNcmPzR2... #virtualdisabiltyexpo #letsconnectaustralia #NDIS #dacvirtualexpo #ndlo #disability #disabilityawareness #wheelchair #disabilityrights #wheelchairlife #disabilityadvocate #disabilityinclusion #disabilitypride #accessibility #inclusion #specialneeds #disabilities #chronicillness #wheelchairuser #paraplegic #disabilitysupport #cerebralpalsy #autism #abilitynotdisability #chronicpain #disabilityservices #developingaustraliancommunities

A conversation on #MentalHealth, #DisabilityHealth, and @AllofUsResearch was the third panel in AAHD’s 2023-2024 Disability and Health Webinar series! We hope you’ll join us for future webinars in this series. Check out the conversation here: https://lnkd.in/eZE7chpY Here is a quote from panelist @autistichoya: "It can be extraordinarily difficult for many disabled people to receive the exact type of services that they actually require in order to be able to stay in their home; To be able to choose and make decisions about their housing; To choose and make decisions about their educational pursuits of any kind; and to choose and make decisions about where, whether, how much, and in what way they work." Help us empower disability health research that looks at social drivers of health. #JoinAllofUs #AllofUsInclusion #JoinAllofUs

35% off LAUNCH SPECIAL Sign up and purchase your booth in local and regional halls or nationally -Be interviewed, share your content and show your skills -Help us build this first of it’s kind platform -Connect with thousands of people -Get behind this amazing initiative and become a sponsor The search for service options never stops. People around Australia continue to look for what’s on in their region, what services are available and now this can be done from the comfort of your home, 24 hours a day, 7 days a week. People can visit the Disability Connection Virtual Expo today and connect with services, advocates, watch updates and content, find out what is on and earn points to be part of our monthly prize draws. There are over 4.4 Million people living with disability in Australia and tens of thousands of service providers, allied health professionals, advocacy groups and supports. People still cannot always find the right information and services where they need them, when they need them. People in rural areas and our outback face even greater difficulty. This is why we wanted to provide a way for people to connect with NDIS and mainstream health services, advocate groups and community options nation-wide. Be part of our launch and join a hall in your area as we grow and expand regionally with your support. By people with disability for people with disability and providers. Purchase you booth today here https://lnkd.in/gnRPjiSN Check out our Virtual Expo Exhibiter and Sponsor kit here https://lnkd.in/gNET-avt #virtualdisabiltyexpo #letsconnectaustralia #NDIS #dacvirtualexpo #ndlo #disability #disabilityawareness #disabled #wheelchair #disabilityrights #wheelchairlife #disabilityadvocate #disabilityinclusion #disabilitypride #accessibility #inclusion #specialneeds #disabilities #chronicillness #wheelchairuser #paraplegic #disabilitysupport #cerebralpalsy #autism #abilitynotdisability #chronicpain #disabilityservices #developingaustraliancommunities

🌟✨ Breaking boundaries in disability policy research! 📚 The Disability Policy Research Program (DiPo) University of Calgary, McGill University, in partnership with dedicated researchers, proudly presents the "Disability Policy in Canada Federal Report." Commissioned, funded, and backed by Kids Brain Health Network (KBHN), this extensive report unveils the intricate fabric of federal disability policy in Canada. 🧠💡 Explore the findings and insights shaping the landscape of inclusivity and support for individuals across the nation. Together, let's drive impactful change! Read the full report here: https://ow.ly/UElT50Qi7sa #DisabilityPolicy #InclusiveCanada

Did you know? Disability can impact anyone, any time. Explore the concept of being 'temporarily abled,' the importance of disability awareness, and why we should all be vested in the cause. 👉🏾DID YOU KNOW? All of us are temporarily abled? 👉🏾There are two schools of thought on disability: 1) a person is abled 2) a person is disabled 👉🏾Temporarily abled simply means we are not immune to acquiring a disability. 👉🏾As the largest minority group in the world, the disability community is the only one that anyone can become a member at any time. 👉🏾Disabilities are a natural part of the human experience and everyone should be vested in the cause. 👉🏾Globally, 1 in 6 of us are living with a disability.* 👉🏾Being 'temporarily abled' reminds us that disability can affect anyone at any time. Credit: WHO (World Health Organization) https://lnkd.in/eEAq6kFP ✨Voiced by Gabriella Mendonca ✨For more advocacy-related content and amazing stories that demystify blindness please subscribe to Bold Blind Beauty’s YouTube Channel: https://lnkd.in/eH8wy7Bs Video Description: All content is text only on 8 slides alternating on black and white backgrounds.

Accessible information helps people with disability to have their say. Given one in five people in Australia have some form of disability and the unemployment rate for people with disability hasn’t changed in 30 years, we must remove the barriers to meaningful employment. We’re proud to have been involved with two key initiatives that are part of Australia’s current Disability Strategy: 1. Guidelines for Engaging with People with Disability Executive Summary - #EasyRead version: https://lnkd.in/gc5ivUuk The Guidelines give organisations practical ideas about how to engage with and include people with disability in a respectful way (e.g. when doing activities such as research and planning). 2. Options Paper on the Disability Employment Centre of Excellence - #EasyRead version: https://lnkd.in/gB4q_NiW   The Options Paper explores ideas about a proposed Disability Employment Centre of Excellence (a ‘one-stop-shop’ for information, guidance and collaboration). Both Department of Social Services (DSS) initiatives were informed by people with lived experience of disability. We hope these #EasyRead resources help people to access information and engage in these important projects. You may also be interested in this CommunicateHealth, Inc. article about increasing diversity, equity and inclusion in clinical trials: https://lnkd.in/gsDX5-Nn Thanks to Stephanie Hathaway from ThinkPlace for engaging Easy Read Australia to work on the Guidelines. #Access #Inclusion #AccessibleInformation #EasyRead #EasyReadAustralia #DisabilityEmployment #Research #Disability #NothingAboutUsWithoutUs

We're delighted to launch our "Mission Disability Reduction and Inclusion" World Health Innovation Summit CIC Around one billion (15% of the world population) have some level of disability according to the World Health Organization (WHO) and World Bank. The annual costs of childhood disability reported in the studies ranged $450–69,500. In developing countries, the costs ranged $500–7500 while in developed countries it ranged $450–69,500. (Ref: The Economic Costs of Childhood Disability: A Literature Review Ahmed Ramadan Shokry Shahat1,* and Giulia Greco2 in the International journal of Environmental Research & public health, 2021 Apr; 18(7): 3531.) Childhood disability imposes a heavy economic burden on families, health systems, societies & National GDP. The reason for the wide range of costs is the variability in perspective, costs included, methods, and disability type. The annual societal costs for one disabled child could be up to the country’s GDP per capita. The burden is heavier on households in developing countries as most of the costs are paid out-of-pocket leading to impoverishment of the whole family. Efforts should be directed to avoid preventable childhood disabilities and to support disabled children and their households to make them more independent and increase their productivity. This is why we're launching our "Mission Disability Reduction and Inclusion" as we want to support families. Dr. ZAFAR MEENAI will lead the initiative and will be supported by an expert group Neela Shabde and their Mission will be: 1. Convergence of stakeholders. 2. Functional Integration of every child. 3. Awareness building - Community and school capacity building. 4. Family empowerment through multidisciplinary support. 5. Improving compliance by videoconferencing, AI, Animation etc. The initiative will also come in under our fiscal sponsored organisation World Health Service 501 (3) c which will enable investors and donors to support disabilities and inclusion programs and initiatives worldwide. More details: https://lnkd.in/e_kJnSXT #leavenoonebehind #HealthforAll #WHIS