Here are a few practical steps and essential tips on how to advocate for yourself with a rare disease.

🌟 Want 10% off this item?? Join our email list here! https://www.alura.io/subscribe?=SpoonieSisterShop 🌟 Floral zebra & flowers sticker! The zebra represents a rare chronic illness or cancer. Super cute to stick anywhere for instant rare disease support + awareness! 🦓 This listing is for ONE kiss-cut sticker. Printed on durable, high opacity adhesive vinyl which makes it perfect for regular use, as well as for covering other stickers or paint. The high-quality vinyl ensures there are no bubbles when applying the stickers! DETAILS: • This listing is for one kiss-cut sticker • Made to order • High opacity film that’s impossible to see through • Fast and easy bubble-free application • Durable vinyl, perfect for indoor use • 10% of proceeds donated to NORD® for rare disease advocacy + research Pairs perfectly with our customizable Floral Zebra Rare Disease Shirt: https://www.etsy.com/listing/1373896333/custom-zebra-rare-disease-awareness Don’t forget to clean the surface before applying the sticker!🦓 May ship separately from other shop items. If you have any questions regarding this listing, please hit the “Ask a Question” button next to the price, and I will get back to you within 24 hours! // I’d love to see how you style and enjoy your sticker! Snap a photo and tag us on Instagram @SpoonieSisterShop Find other goodies made FOR spoonies, BY a spoonie at https://www.etsy.com/shop/SpoonieSisterShop

Here are a few practical steps and essential tips on how to advocate for yourself with a rare disease.

Orphan drugs are designated drug substances that are intended to treat rare or 'orphan' diseases. More than 7000 rare diseases are known that collectively affect some 6-7% of the developed world's population; however, individually, any single, rare disease may only affect a handful of people making them commercially unattractive for the biopharmaceutical industry to target. Ground breaking legislation, starting with the Orphan Drug Act that was passed in the US in 1983 to provide financial incentives for companies to develop orphan drugs, has sparked ever increasing interest from biopharmaceutical companies to tackle rare diseases. These developments have made rare diseases, and the orphan drugs that treat them, sufficiently attractive to pharmaceutical development and many pharmaceutical companies now have research units dedicated to this area of research. It is therefore timely to review the area of orphan drugs and some of the basic science, drug discovery and regulatory factors that underpin this important, and growing, area of biomedical research. Written by a combination of academic and industry experts working in the field, this text brings together expert authors in the regulatory, drug development, genetics, biochemistry, patient advocacy group, medicinal chemistry and commercial domains to create a unique and timely reference for all biomedical researchers interested in finding out more about orphan drugs and the rare diseases they treat. Providing an up-to-date monograph, this book covers the basic science, drug discovery and regulatory elements behind orphan drugs and will appeal to medicinal and pharmaceutical chemists, biochemists and anyone working within the fields of rare disease research and drug development or pharmaceuticals in industry or academia.

Floral blue Adrenal Insufficiency awareness ribbon sticker! Super cute to stick anywhere for instant support + awareness, or to gift to a loved one battling Adrenal Insufficiency! 💙 This listing is for ONE sticker. Printed on durable, high opacity adhesive vinyl which makes it perfect for regular use, as well as for covering other stickers or paint. The high-quality vinyl ensures there are no bubbles when applying the stickers! / DETAILS • This listing is for one sticker • Made to order • High opacity film that’s impossible to see through • Fast and easy bubble-free application • Durable vinyl, perfect for indoor use • 10% of proceeds donated to NORD® for rare disease advocacy + research Don’t forget to clean the surface before applying the sticker!💙 Ships separately from other shop items. If you have any questions regarding this listing, please hit the “Ask a Question” button next to the price, and I will get back to you within 24 hours! // I’d love to see how you style and enjoy your sticker! Snap a photo and tag us on Instagram @SpoonieSisterShop Find other goodies made FOR spoonies, BY a spoonie at https://www.etsy.com/shop/SpoonieSisterShop

The ultimate Antiphospholipid Syndrome diagnosis resource guide from A to Z. Written by an APS patient with over 20 years of lived experiences.

🌟 Want 10% off this item?? Join our email list here! https://www.alura.io/subscribe?=SpoonieSisterShop 🌟 Floral zebra awareness ribbon sticker! Super cute to stick anywhere for instant support + rare disease awareness, or to gift to a loved one battling ANY rare chronic illness! 🦓💙 This listing is for ONE kiss-cut sticker. Printed on durable, high opacity adhesive vinyl which makes it perfect for regular use, as well as for covering other stickers or paint. The high-quality vinyl ensures there are no bubbles when applying the stickers! / DETAILS • This listing is for one kiss-cut sticker • Made to order • High opacity film that’s impossible to see through • Fast and easy bubble-free application • Durable vinyl, perfect for indoor use • 10% of proceeds donated to NORD® for rare disease advocacy + research Don’t forget to clean the surface before applying the sticker!🦓 Ships separately from other shop items. If you have any questions regarding this listing, please hit the “Ask a Question” button next to the price, and I will get back to you within 24 hours! // I’d love to see how you style and enjoy your sticker! Snap a photo and tag us on Instagram @SpoonieSisterShop Find other goodies made FOR spoonies, BY a spoonie at https://www.etsy.com/shop/SpoonieSisterShop

A new genetic testing technique - called ANEVA-DOT could provide hope for rooting out the underlying causes of rare genetic diseases.

The more I think about it, the fact that data sits in silos and is in different formats is the thing that is preventing true patient centricity, because it’s what stops you determining whether intervention X actually created result Y within the population, and hence reward the right kind of behaviour.' PAUL SIMMS, CHAIRMAN EYEFORPHARMA… Read More NOT LONG NOW! eyeforpharma Barcelona 2020. Take a look at the agenda! BONUS Q&A re: patient centricity with Paul Simms

Self-advocacy doesn't come naturally for columnist Anna Jeter, although she is acutely aware of its importance when living with PH.

My chronic illness advocacy efforts include raising awareness, educating, and empowering patients and to be their own best advocate.

Please Note that the Tender Point Test (TPT) is no longer part of the diagnostic elements for diagnosing Fibromyalgia and this is for educational purposes only. However, regarding the history of fibromyalgia it still remains as an integral part of learning. Many fibromyalgia patients diagnosed prior to the the change of criteria in 2012, 2013… Read More Fibro Files: 1990 ACR classification pdf and Tender Points image for diagnosing Fibromyalgia

Having a rare disease is a strange experience because it means that there aren't many others walking the same journey. Luckily, modern technology and social media have allowed us to find and connect with others, which is extremely important!

Contributing to the conversation about out of control healthcare costs in the USA by sharing figures from my medical charges as a chronically ill person.

🌟 Möchtest du 10% rabatt auf diesen Artikel?? Treten Sie hier unserer E-Mail-Liste bei! 🌟 https://www.alura.io/subscribe?=SpoonieSisterShop Florale rote, weiße und blaue Raynauds Bewusstseinsband-Aufkleber! Super niedlich, um überall zu bleiben für sofortige Unterstützung + Bewusstsein, oder als Geschenk für einen lieben Menschen, der mit Raynaud zu kämpfen hat! 💙❤️ Dieses Angebot gilt für EINEN Sticker. Gedruckt auf strapazierfähigem, hochopastem Klebe-Vinyl, was es perfekt für den regelmäßigen Gebrauch sowie zum Bedecken anderer Sticker oder Farbe macht. Das hochwertige Vinyl sorgt für keine Luftblasen beim Aufbringen der Aufkleber! / DETAILS • Dieses Angebot gilt für einen Sticker • Auf Bestellung gefertigt • Hoch opparente Folie, die nicht durchsichtig ist • Schnelle und einfache blasenfreie Anwendung • Strapazierfähiges Vinyl, perfekt für den Innenbereich • 10% der Erlöse, die NORD® für seltene Krankheiten gespendet werden, für Diekerei + Forschung Vergessen Sie nicht, die Oberfläche vor dem Auftragen des Aufklebers zu reinigen! 💙 Wird separat von anderen Shopartikeln versendet. Wenn Sie Fragen zu diesem Angebot haben, klicken Sie bitte neben dem Preis auf den Button "Frage stellen", und ich werde sie innerhalb von 24 Stunden kontaktieren! // Ich würde gerne sehen, wie du stylest und Freude an deinem Sticker hast! Machen Sie ein Foto und markieren Sie uns auf Instagram @SpoonieSisterShop Finden Sie andere Leckereien für Löffel, by a spoonie bei https://www.etsy.com/shop/SpoonieSisterShop

Completing household tasks when you have a chronic illness or disability feels overwhelming. There's cleaning, cooking, and laundry to worry about.

"I think some people write this off as trivial or hokey, but..."

One of the reasons that living with chronic illness can be so tough is because of how it impacts the rest of your life. On top of the inherent difficulties of living with chronic illness, we are usually faced with tough decisions that require us to reprioritize other aspects of our lives. But, makin

When living with chronic illness and chronic pain, there are many unexpected side effects, and one of them is the appearance of shame and guilt

• T-SHIRT • DESCRIPTION • Welcome to Unified By Design Shop, where style meets advocacy! We create bold, empowering designs for the fierce warriors battling rare diseases, chronic illnesses, and the daily grind of feeling misunderstood. Our "Care for the Rare" collection is more than just trendy fashion—it's a statement. Whether you're raising awareness for Ehlers-Danlos Syndrome, Endometriosis, POTS, or any other condition that makes you uniquely you, our pieces help you wear your story with pride. Join our community, celebrate your strength, and make sure the world knows: your battle is real, and your voice matters. Shop now and be seen, heard, and valued! This design can also be put on a sweatshirt, hoodie or tote bag. If you'd like this design on another product or color, please send us a message. We are always happy to make your purchase uniquely you! • ORIGINAL • DESIGN • Every design in this shop, Unified by Design, is a labor of love, crafted with originality and care. While some elements may be sourced from purchased clip art, the overall composition and creative concept are uniquely ours. We take pride in curating and arranging these elements to create meaningful and impactful designs that resonate with you. Your support directly fuels our passion for crafting original pieces that stand out from the crowd. Thank you for standing with us in supporting ethical and original creators like ourselves. Together, we're making a difference, one unique design at a time. 💕 • Q U I C K • F A C T S • ✺ Comfort Colors Brand T-Shirt ✺ Ethically harvested and sustainably grown US cotton ✺ Environmentally friendly clean pigment-dyeing process ✺ Garment gets softer with each wash ✺ No side seams for a relaxed fit • P R I N T • This item features Direct-to-Garment printing, a process where the ink is printed directly into the fabric, ensuring a vibrant and long-lasting print. We're committed to environmentally friendly practices, and our print-on-demand model minimizes waste by producing items only when they're ordered. This not only reduces environmental impact but also allows us to maintain high-quality standards for every piece we create. • S I Z I N G • ✺ T-shirt sizing is unisex and runs true to size ✺ Designed for a comfortable fit, suitable for everyday wear ✺ Many customers prefer an oversized look; for this, size up accordingly ✺ View photo for sizing visuals and measurements • W A S H I N G • I N S T R U C T I O N S • To keep your garment looking fresh and vibrant, follow these simple steps: ✺Wash inside out to preserve the print's integrity ✺Use cold water and a mild detergent to protect the fabric and colors ✺Air dry or use a low-heat tumble in the dryer ✺Avoid fabric softeners, which can affect print quality and fabric feel ✺If ironing, turn the garment inside out and avoid ironing the graphic ✺Do not dry clean • S H I P P I N G • T I M E S • Our items are individually made with love for each of our buyers. Because of this, our processing time is 2-5 business days (depending on order volume) plus transit time, but typically much faster. We know our customers want their items as quickly as possible! • R E T U R N • P O L I C Y • We're dedicated to providing you with a top-notch experience, tailored to your needs. Due to the custom nature of our business and our commitment to print each item to order, we're unable to accept returns. However, if your order arrives defective or there's an error on our part, we're here to make it right with an exchange. Your satisfaction is our priority, so don't hesitate to reach out if you have any concerns. • K E E P • S H O P P I N G • ↓↓↓ ↓↓↓ ✺ Send us a message if you would like this shirt design on a sweatshirt, tote bag or other product. ✺ Shop our entire Unified by Design collection here: https://www.etsy.com/shop/UnifiedByDesignShop

“Disability doesn’t make you exceptional, but questioning what you think you know about it does.” – Stella Young The danger of being viewed through the lense of the “i…

Chronic Illness can bring you down emotionally and physically, but you don't have to take it lying down! These chronic illness quotes will

"I’m trying every day to be the best mom I can be."

When it comes to dealing with chronic illness, getting the hang of pacing is a game-changer. I've been through it, and in this post I spill the beans on what works and what totally doesn't. Let's dive into the nitty-gritty of energy management and finding your pace.

• LONG SLEEVE T-SHIRT • DESCRIPTION • Welcome to Unified By Design Shop, where style meets advocacy! Our "Care for the Rare" Comfort Colors long sleeve t-shirt is more than just trendy fashion—it's a powerful statement. We create bold, empowering designs for the fierce warriors battling rare diseases, chronic illnesses, and the daily grind of feeling misunderstood. Whether you're raising awareness for Ehlers-Danlos Syndrome, Endometriosis, POTS, or any other condition that makes you uniquely you, our pieces help you wear your story with pride. Join our community, celebrate your strength, and let the world know: your battle is real, and your voice matters. Shop now and be seen, heard, and valued! This long sleeve t-shirt makes the perfect gift for a loved one battling a rare disease. Show your support with a gift that brings both comfort and a smile. We offer free personalized gift messages, so be sure to select the "Mark order as a gift" option and fill out your message before completing your order. Check out the full selection of this design in our shop. It is available on t-shirts, and can be added to sweatshirts, hoodies, and tote bags. If you'd like this design on another product or color, please send us a message. • COMFORT COLORS® • APPAREL • ✺ Superior Comfort and Style Experience the unmatched comfort and timeless style of Comfort Colors garment-dyed shirts. Crafted from 100% cotton, these garments offer a perfect blend of durability and comfort. With minimal shrinkage and no piling, they maintain their shape and feel wash after wash. Our signature colors have a vintage charm, making them a versatile addition to any wardrobe. Whether you're pairing them with shorts, skirts, jeans, leggings, or just lounging in your undies at home, Comfort Colors shirts deliver an effortlessly cool look. • Q U I C K • F A C T S • ✺ Comfort Colors Brand T-Shirt ✺ Ethically harvested and sustainably grown US cotton ✺ Environmentally friendly clean pigment-dyeing process ✺ Garment gets softer with each wash ✺ No side seams for a relaxed fit • ORIGINAL • DESIGN • Every design in this shop, Unified by Design, is a labor of love, crafted with originality and care. While some elements may be sourced from purchased clip art, the overall composition and creative concept are uniquely ours. We take pride in curating and arranging these elements to create meaningful and impactful designs that resonate with you. Your support directly fuels our passion for crafting original pieces that stand out from the crowd. Thank you for standing with us in supporting ethical and original creators like ourselves. Together, we're making a difference, one unique design at a time. 💕 • P R I N T • This item features Direct-to-Garment printing, a process where the ink is printed directly into the fabric, ensuring a vibrant and long-lasting print. We're committed to environmentally friendly practices, and our print-on-demand model minimizes waste by producing items only when they're ordered. This not only reduces environmental impact but also allows us to maintain high-quality standards for every piece we create. • S I Z I N G • ✺ T-shirt sizing is unisex and runs true to size ✺ Designed for a comfortable fit, suitable for everyday wear ✺ Many customers prefer an oversized look; for this, size up accordingly ✺ View photo for sizing visuals and measurements • W A S H I N G • I N S T R U C T I O N S • To keep your garment looking fresh and vibrant, follow these simple steps: ✺Wash inside out to preserve the print's integrity ✺Use cold water and a mild detergent to protect the fabric and colors ✺Air dry or use a low-heat tumble in the dryer ✺Avoid fabric softeners, which can affect print quality and fabric feel ✺If ironing, turn the garment inside out and avoid ironing the graphic ✺Do not dry clean • S H I P P I N G • T I M E S • Our items are individually made with love for each of our buyers. Because of this, our processing time is 2-5 business days (depending on order volume) plus transit time, but typically much faster. We know our customers want their items as quickly as possible! • R E T U R N • P O L I C Y • We're dedicated to providing you with a top-notch experience, tailored to your needs. Due to the custom nature of our business and our commitment to print each item to order, we're unable to accept returns. However, if your order arrives defective or there's an error on our part, we're here to make it right with an exchange. Your satisfaction is our priority, so don't hesitate to reach out if you have any concerns. • K E E P • S H O P P I N G • ✺ Shop our entire Unified by Design collection here: https://www.etsy.com/shop/UnifiedByDesignShop

So, here's what breastfeeding-advocacy isn't: It isn't anti-formula users. Breastfeeding advocacy is about wanting new parents to have access to ALL the facts about how they feed their babies. This includes the risks of using formula milk as a breastmilk substitute...

Floral Graves’ Disease awareness ribbon sticker! Super cute to stick anywhere for instant support + awareness, or to gift to a loved one battling Graves’ Disease 💙 This listing is for ONE sticker. Printed on durable, high opacity adhesive vinyl which makes it perfect for regular use, as well as for covering other stickers or paint. The high-quality vinyl ensures there are no bubbles when applying the stickers! / DETAILS • This listing is for one sticker • Made to order • High opacity film that’s impossible to see through • Fast and easy bubble-free application • Durable vinyl, perfect for indoor use • 10% of proceeds donated to NORD® for rare disease advocacy + research Don’t forget to clean the surface before applying the sticker!💙 Ships separately from other shop items. If you have any questions regarding this listing, please hit the “Ask a Question” button next to the price, and I will get back to you within 24 hours! // I’d love to see how you style and enjoy your sticker! Snap a photo and tag us on Instagram @SpoonieSisterShop Find other goodies made FOR spoonies, BY a spoonie at https://www.etsy.com/shop/SpoonieSisterShop

🌟 Möchtest du 10% rabatt auf diesen Artikel?? Treten Sie hier unserer E-Mail-Liste bei! 🌟 https://www.alura.io/subscribe?=SpoonieSisterShop Weiße chronische idiopathische Urtikaria Bewusstseinsband Aufkleber! Super niedlich, um überall zu bleiben für sofortige Unterstützung + Bewusstsein, oder als Geschenk für einen lieben Menschen, der mit CIU zu kämpfen! ❤️ Dieses Angebot gilt für EINEN Sticker. Gedruckt auf strapazierfähigem, hochopastem Klebe-Vinyl, was es perfekt für den regelmäßigen Gebrauch sowie zum Bedecken anderer Sticker oder Farbe macht. Das hochwertige Vinyl sorgt für keine Luftblasen beim Aufbringen der Aufkleber! / DETAILS • Dieses Angebot gilt für einen Sticker • Auf Bestellung gefertigt • Hoch opparente Folie, die nicht durchsichtig ist • Schnelle und einfache blasenfreie Anwendung • Strapazierfähiges Vinyl, perfekt für den Innenbereich • 10% der Erlöse, die NORD® für seltene Krankheiten gespendet werden, für Diekerei + Forschung Vergessen Sie nicht, die Oberfläche vor dem Anbringen des Aufklebers zu reinigen! ❤️ Wird separat von anderen Shopartikeln versendet. Wenn Sie Fragen zu diesem Angebot haben, klicken Sie bitte auf die Schaltfläche "Frage stellen" neben dem Preis, und ich werde mich innerhalb von 24 Stunden bei Ihnen melden! // Ich würde gerne sehen, wie du stylest und Freude an deinem Sticker hast! Machen Sie ein Foto und markieren Sie uns auf Instagram @SpoonieSisterShop Finden Sie andere Leckereien für Löffel, by a spoonie bei https://www.etsy.com/shop/SpoonieSisterShop