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Rare Disease

New Study Suggests Targeted Next Generation Sequencing Can Aid in Identification of Menkes Disease

In a recent press release, biopharmaceutical company Fortress Biotech announced that their study regarding ATP7A targeted next generation DNA sequencing for Menkes disease was

COVID-19

Looking to the Future: Post COVID-19 Looks for Inclusion Versus Exclusion

By Lauren Thayer from In The Cloud Copy COVID-19 has brought life to a screeching halt for everyone across the world. Schools cancelled, work transitioned

recurrent respiratory papillomatosis

Recurrent respiratory papillomatosis

Experimental Treatment for Recurrent Respiratory Papillomatosis Earns Orphan Drug Designation

According to a story from PR Newswire, the biotechnology company INOVIO has just announced that the company’s investigational product candidate INO-3107 has earned Orphan Drug

Glioblastoma

Study: First Glioblastoma Patient Dosed with Infigratinib

According to GlobeNewswire, BridgeBio Pharmaceuticals and the Ivy Brain Tumor Center have recently began their Phase 0/2 trial of infigratinib. This treatment is meant for

Osteonecrosis

Osteoporosis Patients: Want To Take a Drug Holiday from Bisphophonates?

As reported in Medical Xpress, researchers are studying how patients using bisphosophonates as part of a treatment regime to avoid fractures associated from osteoporosis are

systemic mastocytosis

Systemic mastocytosis

The Latest Advances in Systemic Mastocystosis Molecular Biology Could Change Future Treatment

By Lauren Thayer from In The Cloud Copy Systemic mastocytosis (SM) is a complicated condition of the blood in which excessive numbers of mast cells

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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