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spinal muscular atrp[hy

Spinal Muscular Atrophy

August is Spinal Muscular Atrophy Awareness Month!

August is recognized as Spinal Muscular Atrophy Awareness Month. The goal of this event is to help spread information about this rare disorder among the

Duchenne muscular dystrophy

Duchenne Muscular Dystrophy

Duchenne Muscular Dystrophy: Two Patients with a Rare Mutation Were Just Dosed with Gene Therapy

According to a story from the CureDuchenne Blog, Dr. Kevin Flanigan of Nationwide Children’s Hospital has recently dosed two Duchenne muscular dystrophy patients with an

Best vitelliform macular dystrophy

Researchers Develop Potential Treatment for Best Disease

Currently, over 200 different mutations are linked to the development of best vitelliform macular degeneration (BVMD, or Best disease). But while certain treatments may

Hemophilia A

Eloctate: An Effective Treatment for Hemophilia A

During the 2020 Virtual Congress of the International Society on Thrombosis and Haemostasis (ISTH 2020), which took place from July 12-14, participants discussed the

tuberous sclerosis complex

Tuberous Sclerosis

Tuberous Sclerosis Complex: CBD Oral Solution Epidiolex Approved to Treat Seizures

According to a story from GlobeNewswire, the biopharmaceutical company GW Pharmaceuticals plc recently announced that its CBD oral solution Epidiolex® has recently been approved as

Rare Disease

Teen with vWD Joins Cast of “Hemophilia: The Musical”

Many people use art, music, or writing to cope with events in their life. Personally, my platform is poetry; I love the way that

FEATURED ARTICLE

Taming the Dragon: Living Happily Ever After with Hereditary Angioedema

UPCOMING EVENTS

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Diseases interacts with a persons biochemistry in

Diseases interacts with a persons biochemistry in to create an experience as unique as you. Thank you @upsidedownchronicles for this great graphic! • • • #raredisease #chronicpain #chronicillness #spoonie

We don’t need anyone’s input about our health!

We don’t need anyone’s input about our health! • • • #raredisease #chronicillness #chronicpain #enfermedad #enfermedadesraras #enfermedadcronica #spoonie #spoonielife

You are worthy and respectable and inspiring even

You are worthy and respectable and inspiring even when you can’t get out of bed or feel like your illness has taken your strength. Thank you @teenagers_with_athritis_ for sharing this graphic! • • • #raredisease #chronicillness #chronicpain #spoonie

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

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.

Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

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