Know Rare, New York, NY (2025)

10/01/2025

Our team is here and ready for you. ✨ If you or someone you love is living with IgAN, you can make a difference by participating in research. Together, we can help drive progress for this rare kidney disease. Sign up at https://www.healthstoryai.com/igan?utm_source=facebook/instagram&utm_medium=boostedsocial&utm_campaign=igan_2025_yoga&utm_term=en

09/29/2025

💜 September is Pain Awareness Month. Chronic pain isn’t always visible, but it impacts millions of people every day — including many in the rare disease community.

👉 This month is about:

✔️ Raising awareness of what it means to live with chronic pain

✔️ Highlighting the need for better treatment options

✔️ Encouraging compassion for those whose pain isn’t obvious

Pain may be invisible, but people living with it are not. 💜

09/29/2025

Fatigue isn’t “just being tired.” It can be overwhelming and impact every part of daily life, especially for people living with chronic or rare conditions. 💜

That’s why it helps to have strategies in place. From sleep hygiene to stress management, small changes can make a big difference.

Swipe through for tips to manage fatigue ⬅️ and read the full article here: https://www.knowrare.com/blog-v2/2020/1/31/fatigue-tips

💬 What’s your go-to way to recharge when fatigue hits?

09/26/2025

🧘 September is National Yoga Awareness Month 🧘

Yoga isn’t a cure, but for people living with rare and chronic conditions, including kidney diseases like IgAN, autoimmune conditions, and blood disorders, it may support your health journey. Think stress relief, better sleep, more energy, and emotional balance. ✨

Tips to Get You Started with a Yoga Routine:
1️⃣ Talk to your doctor before beginning any new exercise routine.
2️⃣ Do your research. YouTube, books, local studios, and even free classes at libraries or community centers are great places to start.
3️⃣ Create a comfortable, quiet space at home with a non-slip mat and clothes you can move in.
4️⃣ Begin where you are. Yoga is your own practice, not a competition.
5️⃣ Keep it regular. Even 15–20 minutes a day can make a difference.
6️⃣ Track your results. Try the journaling app to monitor fatigue, emotional health, and record reflections along the way.

💡 Want to learn more about yoga and rare disease? Read the full blog here: https://www.knowrare.com/blog-v2/can-yoga-really-help-with-igan?rq=yoga

09/23/2025

💜 September 24 is aHUS Awareness Day.

aHUS (atypical hemolytic uremic syndrome) is a rare condition where the body’s complement system — usually a defender against infection — becomes overactive. This can cause blood clots, anemia, and kidney damage.

While it’s a complex and sometimes life-threatening disease, aHUS is one of the rare few with available treatments. Raising awareness means more people can get the right diagnosis and care faster.

Swipe through to learn the basics ➡️ and explore resources to support patients and families.

More learning:
📚 Atypical HUS Foundation
📚 aHUS Source (Alexion)
📚 Rare Disease Girl Substack by - thank you for working with us on this post!

09/16/2025

💊 Living with a rare condition like IgA Nephropathy (IGAN), Immune Thrombocytopenia (ITP), or MOG Antibody Disease (MOGAD) often means navigating complex — and expensive — treatment options.

But there are ways to make therapies more accessible:

✔️ Patient assistance programs from pharmaceutical companies

✔️ Copay support from nonprofits and foundations

✔️ Clinical trials that may provide cutting-edge therapies at little or no cost

✔️ Insurance advocacy to fight for broader coverage

At Know Rare, we believe no one should face these challenges alone. That’s why we connect patients to studies, resources, and support that can make a real difference.

👉 Learn more about accessing high-cost treatments in this article from 's founder Nina Wachsman: https://www.knowrare.com/blog-v2/access-to-high-cost-treatments

✨ Have you (or someone you know) found support through a patient assistance program or trial? Share your experience below ⬇️

09/10/2025

🩸 September is ITP Awareness Month.

Immune thrombocytopenia (ITP) is a rare autoimmune disorder where the body mistakenly attacks its own platelets, leading to easy bruising, nosebleeds, fatigue, and more.

Raising awareness matters, as it helps more people recognize the signs, support those affected, and push research forward for better treatments. 💜

Read Laura’s story about living with ITP here: https://www.knowrare.com/blog-v2/living-with-itp-laura

09/08/2025

Today is World Literacy Day, a day enacted to "remind policy-makers, practitioners, and the public of the critical importance of literacy for creating a more literate, just, peaceful, and sustainable society." -

It also coincides with the final post in our Rare Family Reads Series: How Big Are Your Worries, Little Bear?

Written by Jayneen Sanders () & illustrated by Stephanie Fizer Coleman ( )

The Little Bear character of this story demonstrates adaptive ways to process anxiety, through sharing their thoughts with someone trusted and creating art to express their worries. The last couple of pages offer useful tips for adults on various ways to approach and calm an anxious child.

Link to Purchase: https://www.amazon.com/dp/1925089207?linkCode=ssc&tag=onamzchayab09-20&creativeASIN=1925089207&asc_item-id=amzn1.ideas.2VV3BOUUT1XAQ&ref_=aip_sf_list_spv_ofs_mixed_d_asin

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If your family is navigating a rare disease, you may feel unsure how to talk to your children about difficult topics that exist within the world of illness and disability. For this reason, children’s books are a wonderful way to safely initiate these conversations, demystify adaptive equipment, and embrace wellness practices.

Even though these books are written for a toddler and elementary school audience, they can be enjoyed by all ages.

Follow us for more tips and book recommendations!

09/08/2025

Back-to-school can amplify everything—new classes, new social circles, new routines. For rare teens and families, that also means planning for energy, access, and emotional bandwidth. 💜

From choosing the right friends, to building an anti-isolation plan, to finding common ground with siblings—these tips can make this semester gentler and more connected.

✨ Swipe to see highlights, then read the full article here: https://www.knowrare.com/blog-v2/navigating-adolescence-with-rare-disease

09/04/2025

Rare Disease Reads: Family Edition!

Today's book recommendation: Prince Noah and the School Pirates

Written by Silke Schnee (.schnee) & illustrated by Heike Sistig ()

A story of an awesome adventure into a world where children are separated onto different ships for their school days, depending on their gender or ability. When pirates attack, the strengths of each group of children are required for their great escape.

Link to purchase: https://www.amazon.com/dp/0874867657?linkCode=ssc&tag=onamzchayab09-20&creativeASIN=0874867657&asc_item-id=amzn1.ideas.2VV3BOUUT1XAQ&ref_=aip_sf_list_spv_ofs_mixed_d_asin

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If your family is navigating a rare disease, you may feel unsure how to talk to your children about difficult topics that exist within the world of illness and disability. For this reason, children’s books are a wonderful way to safely initiate these conversations, demystify adaptive equipment, and embrace wellness practices.

Even though these books are written for a toddler and elementary school audience, they can be enjoyed by all ages.

Follow us for more tips and book recommendations!

09/03/2025

Rare disease is too big for Instagram alone.

That’s why we’re so excited to announce our new partnership with Inspire, the largest online community built around the experiences of patients and caregivers.

Together, we’ve launched the Know Rare Inspire Community: a private space where patients and caregivers can share stories, ask questions, and connect with people who truly understand.

✨ Join us today → https://www.inspire.com/groups/know-rare/

Because your story deserves more than just a post; it deserves a community. 💜

09/03/2025

Rare Disease Reads: Family Edition!

This week’s book recommendation: Let’s Go Play ()

Written by Shelby McCarthy & illustrated by Rachel Batislaong

A book that demystifies all adaptive equipment. Each page is devoted to a different type of adaptive equipment, playfully showing that these are tools kids use to help them get out and play.

Link to purchase: https://milestorow.com/products/lets-go-play

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If your family is navigating a rare disease, you may feel unsure how to talk to your children about difficult topics that exist within the world of illness and disability. For this reason, children’s books are a wonderful way to safely initiate these conversations, demystify adaptive equipment, and embrace wellness practices.

Even though these books are written for a toddler and elementary school audience, they can be enjoyed by all ages.

Follow us for more tips and book recommendations!

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