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COVID-19

Aloneness – a Note from the LRRO’s Bob Wyborn

This was originally published as the Seventh Newsletter for the Leukodystrophy Resource Research Organisation (LRRO) on April 19th 2020. You can read more from their newsletter

Rare Disease

Kristie’s Story Part 3: Global DARE Foundation – Advocating for a Cure

Click here to read part 1 and here to read part 2 After coming back from the Global Genes conference, Kristie was convinced that establishing

Behçet's disease

Behçet's

May 20th is Behçet’s Disease Awareness Day: Spreading Rare Disease Awareness

May is recognized as Behçet’s Disease Awareness Month and May 20th is recognized as Behçet’s Disease Awareness Day. The focus of these events is to

Lupus

Lupus Nephritis Biomarkers Highlight Race-Based Differences

When studying biomarkers of lupus nephritis, researchers at the University of Houston discovered something interesting: race-based differences. Biomarkers are some sort of measurable substance; in

Nonalcoholic steatohepatitis

Study: EDP-305 for the Treatment of Primary Biliary Cholangitis

Enanta Pharmaceuticals has recently released the results from the second phase of its INTREPID trial, which studied EDP-305 as a treatment for primary biliary cholangitis

COVID-19

CDC Warns of New Syndrome Affecting Children Associated With COVID-19

According to CNN, the CDC recently sent out a health advisory to doctors across the United States alerting them of a new syndrome affecting children

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Taming the Dragon: Living Happily Ever After with Hereditary Angioedema

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May is the awareness month for Behçet’s diseas

May is the awareness month for Behçet’s disease, a rare autoimmune disorder that causes inflammation in different body parts. While surgery can resolve it, often the disease subsides over time. The American Behçets Disease Association is continuing to celebrate despite lockdown restrictions by hosting their walk fundraiser and awareness campaign online. You can contribute by creating your own fundraising page, filling it with your own experience, and sharing that page in social media to get support. • • • #raredisease #chronicillness #spoonie #behcetsdisease #behcets

And then learned news about osteonecrosis through

And then learned news about osteonecrosis through a patient portal. To hear more about Antonio’s story, listen to our latest episode of Wait, How Do You Spell That? via the link in our bio or on most major podcast apps. • • • • • #waithowdoyouspellthat #raredisease #rarediseasepodcast #podcast #huntingtonsdisease #osteonecrosis

Either way it’s not feeling great 😬 Thank yo

Either way it’s not feeling great 😬 Thank you @justchronicmemes for this meme! • • • #raredisease #chronicillness #chronicpain #spoonie

Our destiny is not always determined by what happe

Our destiny is not always determined by what happens to us, but rather how we react to what happens. The outcome of positive attitude is always positive thoughts which eventually lead to positive events. Life for me is a challenge to be met with courage. It is a game of skill with an element of chance. Life comes to a standstill if you give up hope; thus from desiring to live she fought on.” Read what Payal Bhattacharya’s wrote about her health journey with VHL, link in bio👆 • • • #raredisease #chronicillness #chronicpain #spoonie

A person with a chronic illness may have a very de

A person with a chronic illness may have a very definition barometer of ‘fine’ to ‘bad’ when your schedule is speckled with flare ups. It can be hard to explain the situation every time. It’s okay if saying ‘fine’ is easier than getting it, but your pain is legitimate. Thank you @revelatori for these beautiful illustrations! • • • #raredisease #chronicillness #chronicpain #spoonie

There are days and then there are illness days 😅 Thank you @bruisedbutimnotbroken for this tweet! • • • #raredisease #chronicillness #chronicpain #spoonie

On our newest episode of our rare disease podcast

On our newest episode of our rare disease podcast Wait, How Do You Spell That? we talk about mindfulness and meditation. We chat about our personal experiences with it, how mindfulness meditations can be helpful for people in (and outside of) the rare disease community, but also how it can be really *unhelpful* to tell someone to ~just meditate~. You can find the link in our bio, our home page, or most major listening apps.

When you have a chronic illness, you know suggesti

When you have a chronic illness, you know suggestions to try exercise and meditation and yoga are not helpful. While all of these are definitely good for you and could help symptoms, they aren’t the solution for your flare ups. You are not at fault for flare ups, your illness is. You’re the strong one dealing with it. Thank you @myfibroandmejourney for this awesome picture! • • • #raredisease #chronicillness #chronicpain #spoonie

I like this quote because it’s applicable to so

I like this quote because it’s applicable to so many situations, it’s the good in the bad. The work you put in on a daily basis to deal with your symptoms, stress, or anxieties are exercises for your mental muscles. Every struggle is a lesson, and you may be building a whole books worth of tales for it. • • • #raredisease #chronicillness #chronicpain #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.

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