IPH NET

It is the rarest day of the year🦓!

Did you know that there are over 10,000 rare diseases worldwide? Share this post to spread awareness about World Rare Disease day and shed light on those affected.

To learn more about World Rare Disease Day, click here: https://go.globalgenes.org/RDD-2024

Have you got your social media pledge cards ready? 📝🌍

Available to download from our website, our pledge cards are written in 8 languages, allowing you to show your passion for Rare Disease Day, in your local contexts!

Download them today alongside our other resources by clicking on our website here: https://www.rarediseaseday.org/downloads/. Show your support for the international rare disease community today! 💻💡

Despite the difficulties faced by children with chILD and their families, there is hope in every breath. With continued research, support, and awareness, we move closer to finding effective treatments and cures for these diseases. Every breath is a reminder of the resilience of these children and the importance of our support in their fight against chILD.

There are more than 8,000 known rare diseases, 95% of which have no cure or treatment.

Rare Ireland supports 2K families and more than 1.5k different rare conditions.

Mental Health Matters!

Health is shaped by many factors, including relationships and physical wellbeing. For those with rare diseases, community support is crucial. It provides understanding and a sense of belonging, essential for mental health.

Physical health directly impacts mental wellness, emphasising the need for a holistic health approach, especially in rare diseases.

This Rare Disease Day, let's spotlight the importance of mental health in our community. Sharing experiences and support, we strengthen our collective resilience.

✨Introducing 'Rare on Air Stories' ✨

This special addition is a joint initiative between Rare Disease Day and EURORDIS, focused on amplifying the voices of those with rare diseases.

We invite you to join us in sharing powerful stories that build a platform of strength, resilience, and unity. Our goal is to ensure that you, the rare disease community, are heard. 🎙️

Mark your calendars for the release of our first episode in January, and don't forget to set a reminder to tune in.

Living rare is isolating.

Does this journey seem familiar to you? Rare Diseases International's infographic illustrates some of the many challenges people in the rare community meet at different times in their life.

National Jewish Health treats many rare diseases. Here are a few with links for more information:
Alpha-1 https://fal.cn/3wcBk
Cystic Fibrosis https://fal.cn/3wcBh
Lymphangioleiomyomatosis (LAM) https://fal.cn/3wcBj
PAP https://fal.cn/3wcBf
Pulmonary Hypertension/Pulmonary Arterial Hypertension https://fal.cn/3wcBi
Sarcoidosis https://fal.cn/3wcBe
Scleroderma https://fal.cn/3wcBg

🧭 For people living with a rare disease, searching for a diagnosis can be challenging and frequently feel like a detective investigation with no clues, many blind alleys and disbelieving authorities.

🔎 Often, this is because information on the condition isn’t available or because it is difficult to find someone knowledgeable enough to spot the signs of the over 6,000 identified rare diseases.

⏳ Rare Diseases International (RDI) notes that in countries with relatively well-resourced health systems, it can take over five years to reach the correct diagnosis, and often, an adequate diagnosis is never reached.

🤒 Insufficient screening programmes, including newborn screening, and unequal access to diagnostic services, infrastructure, and expertise contribute to delayed diagnosis. Almost half of genetic diseases start in childhood. Timely diagnosis and early access to care can slow disease progression and save lives.

🔦 Furthermore, a condition that is nameless and misunderstood is invisible to society. For the rare disease community, diagnosis gives greater visibility and facilitates social inclusion.

🩺 That is why on we call for action for people living with a rare disease to benefit from equitable access to diagnosis!

👉 Find out more: https://cutt.ly/Q0LwVPv

👉 Read patient stories on access to diagnosis: https://cutt.ly/E0Lexfi

📢 CALLING ALL ORGANISERS, PLANNERS AND HOSTS! 📢

👉 Want to host an event for but don't know where to start?

📖 Get creative! Check out our download materials and start organising your viral campaign with our filters, and don't forget to post the event on our interactive map!

✨ Big or small, online or in-person, every event is important to the global campaign to raise awareness for the rare disease community.

👉 Download our resources and start planning NOW: https://cutt.ly/TOTfgJW

🌏 Post your event on our interactive world map: https://cutt.ly/2OTfxB1

❓ Did you know there are over 6000 identified rare diseases worldwide?

✨ Spread the word that rare diseases are not that rare by downloading our infographics with key rare diseases statistics, available in square and landscape format and seven languages: English, Arabic, French, Spanish, Portuguese, Hindi and Chinese! More translations to come!

📣 Remember: You do not have to wait until on February 28 to show your support for the community – start NOW!

👉 Download them from our website and raise awareness for : https://cutt.ly/cYCUyc9

💡 Remember to use the hashtag so that we can share what you create and show how many the rare disease community is!

Please help us spread awareness about rare disorders in NZ!
It only takes 5 clicks! Help us grow here on Facebook by inviting your Facebook friends to follow Rare Disorders NZ’s page.

Here's how:
1. Go to our profile page - https://www.facebook.com/RareDisordersNZ
2. Click on the box with 3 dots ... (Screen reader users - use the arrow keys or tab down to "See Options" - hit Enter to proceed)
3. Select Invite Friends
4. Select All
5. Send Invite

It’s that easy! Thanks for your help in expanding our digital footprint!

https://creakyjoints.org/support/how-to-support-someone-with-chronic-illness/

How You Can Support Someone with a Chronic Illness (and Some Real Advice on How *Not* To) Learn more about what to do and say to help and support people living with chronic illnesses and what to avoid that can make people feel worse.

YMMV...Always check with your medical provider