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COVID-19

Small City Hospitals Overwhelmed by COVID-19

In 1986, Judy and Larry Pichon were married. The couple lived a happy life in Louisiana, though their days were sometimes complicated by Judy’s

Chronic Fatigue Syndrome

Studies from UCSF Offer New Perspective on Fibromyalgia and Chronic Fatigue Syndrome

Researchers discovered surprising results after performing new studies of chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). According to a report by Cort Johnson in

Cystic hygroma

Rare Pediatric Disease Designation Given for Investigative Lymphatic Malformations Therapy

Rare Pediatric Disease Designation has just been granted by the FDA for an investigative therapy for lymphatic malformations (LMs). This therapy is called TARA-002 and

Autoimmune hemolytic anemia

Nipocalimab is Making Progress in Four Clinical Trials for Autoimmune and Alloimmune Conditions

An investigative therapy for hemolytic disease of the fetus and newborn (HDFN) has just received the FDA’s Rare Pediatric Disease and Orphan Drug Designations. This

rare disease

Rare Disease

This Collaborative Platform Aims to Speed up Rare Disease Drug Development

In a recent webinar hosted by the National Organization for Rare Disorders (NORD), a number of speakers discussed an up and coming project spearheaded by

Cerebral Palsy

OWEAR Makes Datasets and Software More Accessible to Aid Research Technology

By Danielle Bradshaw from In The Cloud Copy Shimmer Research has announced that OWEAR – the Open Wearables Initiative – has decided to make their

FEATURED ARTICLE

Taking Charge of Your HAE Treatment to Help the Next Generation

UPCOMING EVENTS

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You don’t need to justify to anybody why you are

You don’t need to justify to anybody why you are more productive this week than last, you can work late now but it wasn’t possible before, you are less able today that you were yesterday. Illnesses take new shapes and sizes everyday and you learn to know yourself and your current needs, rather than making decisions about what you ‘should’ be capable of now. It’s okay if it changes, you are just respecting yourself and your needs by recognizing that. Thank you @spoonie_village for your classically fantastic graphic! • • • #raredisease #chronicillness #chronicpain #spoonie

There’s tiredness, and then there’s chronic fa

There’s tiredness, and then there’s chronic fatigue which is a whole other level. But regardless of the disease- rare diseases can be soo draining. Which one are you today? Thank you @introvertdoodles for this graphic! • • • #raredisease #chronicillness #chronicpain #spoonie

You don’t have to justify your healthcare needs

You don’t have to justify your healthcare needs to anyone. Listen to yourself. • • • #raredisease #chronicpain #chronicillness #spoonie

Or maybe you do know, but it’s useful to have a

Or maybe you do know, but it’s useful to have a graphic to explain your experience. What common misconceptions do you find about your illness? Thank you @meredithaleighawells for this set of graphics! • • • #raredisease #chronicillness #chronicpain #spoonie

When we get better from an illness, it can feel li

When we get better from an illness, it can feel like we’re losing a part of ourselves- our routine, identity, habits. Illnesses can be time consuming, and play a large role in scheduling our lives. It can be hard to change and reform a new identity and lose your old coping techniques. It makes sense to have become comfortable in sickness, making wellness feels strange. Recovery is a process that includes many details and transitions. Thank you @worrywellbeing for this great design! • • • #raredisease #chronicillness #chronicpain #spoonie #recovery

Your tiredness, your flare ups, and your stress ar

Your tiredness, your flare ups, and your stress are not your fault. You are not guilty for feeling your disease. • • • #raredisease #rarediseaseawareness #chronicpain #chronicillness #enfermedad #enfermedadesraras #enfermedades #spoonie

*replace this with rare diseases and it’s all st

*replace this with rare diseases and it’s all still applicable* Diseases are not contained, they shadow over all of our life. This web could continue to get more and more specific because disease affects the details. Thank you @crazyheadcomics for creating this graphic! • • • #raredisease #chronicpain #chronicillness #spoonie

In celebration of 30 years since the ADA was passe

In celebration of 30 years since the ADA was passed, @meredithaleighawells made this lovely graphic to give some context to how that history played out. Educate yourself 🙂 • • • #raredisease #chronicillness #chronicpain #spoonie #ada #americanswithdisabilitiesact

Our diseases often impede on our ability to do all

Our diseases often impede on our ability to do all the things we used to, whether it be because of symptoms, fatigue, busy medical schedules, or heightened risk. You are still strong, durable you, even if you’re schedule isn’t the same. • • • #raredisease #chronicpain #chronicillness #spoonie #enfermedad #enfermedadesraras #enfemedadrara #enfermedadcronica

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.

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