Steffens Scleroderma Foundation

Steffens Scleroderma Foundation www.steffens-scleroderma.org Ann's nature was to help others, and she participated in several research studies throughout her life.

The Steffens Scleroderma Foundation was formed in memory of Ann Steffens who was diagnosed with scleroderma in 1984 and passed away in 1997. Her mother Helen Polenz donated the funds to create the research center in the hope of sparing others the pain of losing a loved one to this disease.

Winter doesnโ€™t end on its own. We help turn the page together.Join us for ๐‘พ๐’Š๐’๐’•๐’†๐’“โ€™๐’” ๐‘ฌ๐’๐’…, a Rare Disease Day fundraiser su...
01/23/2026

Winter doesnโ€™t end on its own. We help turn the page together.

Join us for ๐‘พ๐’Š๐’๐’•๐’†๐’“โ€™๐’” ๐‘ฌ๐’๐’…, a Rare Disease Day fundraiser supporting the ๐ƒ๐ž๐ ๐จ๐ฌ ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž ๐…๐จ๐ฎ๐ง๐๐š๐ญ๐ข๐จ๐ง.

Held during Rare Disease Day weekend, it brings our community together for awareness and research.

๐Ÿ“… ๐’๐ฎ๐ง๐๐š๐ฒ, ๐Œ๐š๐ซ๐œ๐ก ๐Ÿ, ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ”
๐Ÿ• ๐Ÿ ๐๐Œ โ€“ ๐Ÿ“ ๐๐Œ
๐Ÿ“ ๐’๐ข๐๐ž๐ฅโ€™๐ฌ ๐‘๐ž๐ฌ๐ญ๐š๐ฎ๐ซ๐š๐ง๐ญ ๐ข๐ง ๐’๐œ๐ซ๐š๐ง๐ญ๐จ๐ง, ๐๐€
๐ŸŽŸ๏ธ $๐Ÿ“๐ŸŽ ๐ญ๐ข๐œ๐ค๐ž๐ญ ๐๐จ๐ง๐š๐ญ๐ข๐จ๐ง. ๐˜›๐˜ช๐˜ค๐˜ฌ๐˜ฆ๐˜ต๐˜ด ๐˜ฎ๐˜ถ๐˜ด๐˜ต ๐˜ฃ๐˜ฆ ๐˜ฑ๐˜ถ๐˜ณ๐˜ค๐˜ฉ๐˜ข๐˜ด๐˜ฆ๐˜ฅ ๐˜ช๐˜ฏ ๐˜ข๐˜ฅ๐˜ท๐˜ข๐˜ฏ๐˜ค๐˜ฆ, ๐˜ด๐˜ฐ ๐˜ฅ๐˜ฐ๐˜ฏโ€™๐˜ต ๐˜ธ๐˜ข๐˜ช๐˜ต!
๐Ÿ”— https://www.degosdisease.org/events/winters-end

Come for the food, live music and community and stay for a brief talk from ๐“๐ก๐ž๐ซ๐ž๐ฌ๐š, sharing her personal journey with Degos Disease.

And yesโ€ฆweโ€™re having ๐๐ž๐ฌ๐ฌ๐ž๐ซ๐ญ ๐›๐ž๐Ÿ๐จ๐ซ๐ž ๐๐ข๐ง๐ง๐ž๐ซ in honor of Adam. ๐Ÿฐ

Your ticket supports research and awareness and helps families feel seen, supported and less isolated.

Share this with a friend and help us pack the room for rare disease awareness.

"๐‘พ๐’‰๐’‚๐’• ๐’‚๐’“๐’† ๐’š๐’๐’– ๐’…๐’๐’Š๐’๐’ˆ ๐’‡๐’๐’“ ๐’๐’•๐’‰๐’†๐’“๐’”?" -๐ƒ๐ซ. ๐Œ๐š๐ซ๐ญ๐ข๐ง ๐‹๐ฎ๐ญ๐ก๐ž๐ซ ๐Š๐ข๐ง๐ , ๐‰๐ซ.He taught us that every person deserves dignity, compassio...
01/19/2026

"๐‘พ๐’‰๐’‚๐’• ๐’‚๐’“๐’† ๐’š๐’๐’– ๐’…๐’๐’Š๐’๐’ˆ ๐’‡๐’๐’“ ๐’๐’•๐’‰๐’†๐’“๐’”?" -๐ƒ๐ซ. ๐Œ๐š๐ซ๐ญ๐ข๐ง ๐‹๐ฎ๐ญ๐ก๐ž๐ซ ๐Š๐ข๐ง๐ , ๐‰๐ซ.

He taught us that every person deserves dignity, compassion and the chance to be seen and supported. We hold that belief close and stand with the people who face rare disease every day.

As part of this community, you help expand access to care, strengthen support for families and push for research that brings hope within reach.

MLK Day is not a day off. It is a moment to look toward one another and choose to help. We continue working toward a more equitable and caring world for the scleroderma community.

If you feel moved to honor Dr. Kingโ€™s legacy, ๐ฉ๐ฅ๐ž๐š๐ฌ๐ž ๐ฌ๐ก๐š๐ซ๐ž ๐ญ๐ก๐ข๐ฌ ๐ฉ๐จ๐ฌ๐ญ and help us raise more awareness about rare disease.

๐–๐š๐ง๐ญ ๐ญ๐จ ๐ฆ๐š๐ค๐ž ๐š ๐ซ๐ž๐š๐ฅ ๐๐ข๐Ÿ๐Ÿ๐ž๐ซ๐ž๐ง๐œ๐ž ๐ข๐ง ๐ญ๐ก๐ž ๐Ÿ๐ฎ๐ญ๐ฎ๐ซ๐ž ๐จ๐Ÿ ๐ก๐ž๐š๐ฅ๐ญ๐ก๐œ๐š๐ซ๐ž?Whether youโ€™re living with scleroderma or caring for someone ...
01/13/2026

๐–๐š๐ง๐ญ ๐ญ๐จ ๐ฆ๐š๐ค๐ž ๐š ๐ซ๐ž๐š๐ฅ ๐๐ข๐Ÿ๐Ÿ๐ž๐ซ๐ž๐ง๐œ๐ž ๐ข๐ง ๐ญ๐ก๐ž ๐Ÿ๐ฎ๐ญ๐ฎ๐ซ๐ž ๐จ๐Ÿ ๐ก๐ž๐š๐ฅ๐ญ๐ก๐œ๐š๐ซ๐ž?

Whether youโ€™re living with scleroderma or caring for someone who is, your story can teach future doctors and nurses what textbooks cannot.

๐˜๐จ๐ฎ๐ซ ๐ฏ๐จ๐ข๐œ๐ž. ๐“๐ก๐ž๐ข๐ซ ๐ž๐๐ฎ๐œ๐š๐ญ๐ข๐จ๐ง. ๐๐ž๐ญ๐ญ๐ž๐ซ ๐œ๐š๐ซ๐ž. Join one of our upcoming virtual teaching sessions to turn your journey into a lesson that helps students provide more compassionate care.

Choose a Session:
โ€ข ๐“๐ฎ๐ž๐ฌ๐๐š๐ฒ, ๐…๐ž๐›๐ซ๐ฎ๐š๐ซ๐ฒ ๐Ÿ๐Ÿ’ (5 โ€“ 8:30 p.m. EST)
โ€ข ๐–๐ž๐๐ง๐ž๐ฌ๐๐š๐ฒ, ๐€๐ฉ๐ซ๐ข๐ฅ ๐Ÿ– (5 โ€“ 8:30 p.m. EST)

Two Ways to Register:
1. ๐…๐จ๐ฅ๐ฅ๐จ๐ฐ ๐ญ๐ก๐ž ๐ฅ๐ข๐ง๐ค: tinyurl.com/nvureyv2
2. ๐’๐œ๐š๐ง ๐ญ๐ก๐ž ๐๐‘ ๐œ๐จ๐๐ž on the right side of posted flyer.

๐‹๐ž๐š๐ซ๐ง ๐ฆ๐จ๐ซ๐ž about the ๐ˆ๐๐„ ๐๐ซ๐จ๐ ๐ซ๐š๐ฆ at steffens-scleroderma.org/ipe

Help us spread the word!
โ€ข ๐’๐ก๐š๐ซ๐ž ๐ฐ๐ข๐ญ๐ก ๐š ๐Ÿ๐ซ๐ข๐ž๐ง๐ who has a story to tell.
โ€ข ๐‘๐ž๐ฉ๐จ๐ฌ๐ญ and invite others to widen the circle where ๐“๐ก๐ž ๐๐š๐ญ๐ข๐ž๐ง๐ญ ๐ˆ๐ฌ ๐ญ๐ก๐ž ๐„๐๐ฎ๐œ๐š๐ญ๐จ๐ซ!

Together, we can teach the heart of medicine.

Rare is everywhere. It's just often invisible.Over ๐Ÿ‘๐ŸŽ๐ŸŽ ๐Œ๐ˆ๐‹๐‹๐ˆ๐Ž๐ people worldwide live with a rare disease. If all those p...
01/11/2026

Rare is everywhere. It's just often invisible.

Over ๐Ÿ‘๐ŸŽ๐ŸŽ ๐Œ๐ˆ๐‹๐‹๐ˆ๐Ž๐ people worldwide live with a rare disease.

If all those people lived in one place, it would be the 3rd largest country in the world. Despite these numbers, many in our community feel isolated and face conditions that are often undiagnosed or misunderstood.

We stand with and advocate for those affected by ๐Ÿ”,๐ŸŽ๐ŸŽ๐ŸŽ+ ๐ซ๐š๐ซ๐ž ๐๐ข๐ฌ๐ž๐š๐ฌ๐ž๐ฌ. We believe every person deserves:

โœ“ Faster, more equitable diagnosis
โœ“ Breakthrough treatments
โœ“ Care that sees the whole person
โœ“ Real social opportunities and inclusion

The theme for ๐‘๐š๐ซ๐ž ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž ๐ƒ๐š๐ฒ ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ” is ๐‘ด๐’๐’“๐’† ๐‘ป๐’‰๐’‚๐’ ๐’€๐’๐’– ๐‘ช๐’‚๐’ ๐‘ฐ๐’Ž๐’‚๐’ˆ๐’Š๐’๐’†. The strength of these rare individuals and families truly is just that.

Rare Disease Day is ๐…๐ž๐›๐ซ๐ฎ๐š๐ซ๐ฒ ๐Ÿ๐Ÿ”. Will you help us turn ๐’“๐’‚๐’“๐’† into ๐’‚๐’˜๐’‚๐’“๐’†?

๐Ÿ“Œ ๐’๐ก๐š๐ซ๐ž ๐ญ๐ก๐ข๐ฌ ๐ฉ๐จ๐ฌ๐ญ to show your support.
๐Ÿ“Œ ๐“๐š๐  ๐ฌ๐จ๐ฆ๐ž๐จ๐ง๐ž who inspires you with their resilience.
๐Ÿ“Œ ๐•๐ข๐ฌ๐ข๐ญ ๐จ๐ฎ๐ซ ๐ฐ๐ž๐›๐ฌ๐ข๐ญ๐ž to learn how we're fighting for a cure.

https://www.steffens-scleroderma.org/

๐Ÿ’๐Ÿ— ๐๐š๐ฒ๐ฌ ๐ญ๐จ ๐ ๐จ!February 28 is the rarest day of the year, and itโ€™s our moment to stand with all people living with rare d...
01/09/2026

๐Ÿ’๐Ÿ— ๐๐š๐ฒ๐ฌ ๐ญ๐จ ๐ ๐จ!

February 28 is the rarest day of the year, and itโ€™s our moment to stand with all people living with rare diseases.

๐‘๐š๐ซ๐ž ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž ๐ƒ๐š๐ฒ isnโ€™t just a date on the calendar. Itโ€™s a chance to learn, connect and show up for one another.

๐‰๐จ๐ข๐ง ๐ญ๐ก๐ž ๐ฃ๐จ๐ฎ๐ซ๐ง๐ž๐ฒ. ๐‚๐ž๐ฅ๐ž๐›๐ซ๐š๐ญ๐ž ๐ซ๐š๐ซ๐ž ๐ฌ๐ญ๐ซ๐ž๐ง๐ ๐ญ๐ก.

Every story we share shines more light on a community that deserves to be seen.

๐๐ซ๐จ๐ ๐ซ๐ž๐ฌ๐ฌ ๐ข๐ฌ ๐ฉ๐จ๐ฐ๐ž๐ซ๐ž๐ ๐›๐ฒ ๐ฉ๐š๐ซ๐ญ๐ง๐ž๐ซ๐ฌ๐ก๐ข๐ฉ.Rare disease research requires a global effort. Thatโ€™s why we are proud to partner wi...
01/09/2026

๐๐ซ๐จ๐ ๐ซ๐ž๐ฌ๐ฌ ๐ข๐ฌ ๐ฉ๐จ๐ฐ๐ž๐ซ๐ž๐ ๐›๐ฒ ๐ฉ๐š๐ซ๐ญ๐ง๐ž๐ซ๐ฌ๐ก๐ข๐ฉ.

Rare disease research requires a global effort. Thatโ€™s why we are proud to partner with a powerhouse network of universities and national institutions to drive progress forward.

From the ๐๐š๐ญ๐ข๐จ๐ง๐š๐ฅ ๐ˆ๐ง๐ฌ๐ญ๐ข๐ญ๐ฎ๐ญ๐ž๐ฌ ๐จ๐Ÿ ๐‡๐ž๐š๐ฅ๐ญ๐ก and ๐‚๐จ๐ซ๐ง๐ž๐ฅ๐ฅ to ๐๐จ๐ฌ๐ญ๐จ๐ง ๐”๐ง๐ข๐ฏ๐ž๐ซ๐ฌ๐ข๐ญ๐ฒ and ๐‚๐ฅ๐ž๐ฆ๐ฌ๐จ๐ง, we are bridging the gap between groundbreaking research and patient care.

Working together, we:

โ€ข ๐€๐œ๐œ๐ž๐ฅ๐ž๐ซ๐š๐ญ๐ž pharmaceutical breakthroughs
โ€ข ๐„๐๐ฎ๐œ๐š๐ญ๐ž the next generation of rare disease specialists
โ€ข ๐๐ซ๐จ๐ฏ๐ข๐๐ž vital resources for families and caregivers

Progress happens faster when we work together.

We invite you to explore our partner network and visit their individual pages to see how they are reshaping the landscape of rare disease research.

๐„๐ฑ๐ฉ๐ฅ๐จ๐ซ๐ž ๐จ๐ฎ๐ซ ๐œ๐จ๐ฅ๐ฅ๐š๐›๐จ๐ซ๐š๐ญ๐ข๐จ๐ง๐ฌ: https://www.steffens-scleroderma.org/collaboration

๐“๐ฐ๐จ ๐ฎ๐ฉ๐œ๐จ๐ฆ๐ข๐ง๐  ๐ ๐š๐ญ๐ก๐ž๐ซ๐ข๐ง๐ ๐ฌ. ๐Ž๐ง๐ž ๐ฌ๐ก๐š๐ซ๐ž๐ ๐œ๐จ๐ฆ๐ฆ๐ข๐ญ๐ฆ๐ž๐ง๐ญ.Join us on ๐…๐ž๐›๐ซ๐ฎ๐š๐ซ๐ฒ ๐Ÿ๐Ÿ• and ๐Œ๐š๐ซ๐œ๐ก ๐Ÿ to raise awareness of rare disease, st...
01/07/2026

๐“๐ฐ๐จ ๐ฎ๐ฉ๐œ๐จ๐ฆ๐ข๐ง๐  ๐ ๐š๐ญ๐ก๐ž๐ซ๐ข๐ง๐ ๐ฌ. ๐Ž๐ง๐ž ๐ฌ๐ก๐š๐ซ๐ž๐ ๐œ๐จ๐ฆ๐ฆ๐ข๐ญ๐ฆ๐ž๐ง๐ญ.

Join us on ๐…๐ž๐›๐ซ๐ฎ๐š๐ซ๐ฒ ๐Ÿ๐Ÿ• and ๐Œ๐š๐ซ๐œ๐ก ๐Ÿ to raise awareness of rare disease, strengthen community connections and turn awareness into meaningful support for those affected by scleroderma and related conditions.

๐„๐ฏ๐ž๐ง๐ญ ๐๐ž๐ญ๐š๐ข๐ฅ๐ฌ, ๐ฅ๐จ๐œ๐š๐ญ๐ข๐จ๐ง๐ฌ ๐š๐ง๐ ๐ฎ๐ฉ๐๐š๐ญ๐ž๐ฌ ๐ฐ๐ข๐ฅ๐ฅ ๐›๐ž ๐ฉ๐จ๐ฌ๐ญ๐ž๐ ๐จ๐ง ๐จ๐ฎ๐ซ ๐ฐ๐ž๐›๐ฌ๐ข๐ญ๐ž ๐ฌ๐จ๐จ๐ง.
https://www.steffens-scleroderma.org/events

Invite friends and family to follow our page and help grow a community committed to awareness and progress.

Awareness doesnโ€™t spread on its own.It moves through people, conversations and shared moments. For rare diseases, that m...
01/06/2026

Awareness doesnโ€™t spread on its own.

It moves through people, conversations and shared moments. For rare diseases, that movement matters.

Earlier understanding can lead to earlier recognition, better care and stronger support for patients and families.

Today, you can help that progress continue with one simple step. Invite a friend, a colleague or a family member to follow our page.

As we step into 2026, weโ€™re grateful for this community and hopeful about whatโ€™s ahead. Moving forward together makes al...
01/03/2026

As we step into 2026, weโ€™re grateful for this community and hopeful about whatโ€™s ahead. Moving forward together makes all the difference.

Every conversation matters. Every shared experience helps. Every act of support strengthens the work in front of us.

The path isnโ€™t always easy, yet itโ€™s meaningful because weโ€™re walking it side by side.

Thank you for being part of this work. Weโ€™re looking ahead with purpose, resolve and hope.

Hereโ€™s to a fresh start in 2026!We wish you comfort, connection and moments of light that carry you through the year. Gr...
01/01/2026

Hereโ€™s to a fresh start in 2026!

We wish you comfort, connection and moments of light that carry you through the year.

Grateful to be walking this path together.

Weโ€™re closing out the year with deep gratitude and a simple ask.If youโ€™ve been meaning to make a year-end gift, thereโ€™s ...
12/31/2025

Weโ€™re closing out the year with deep gratitude and a simple ask.
If youโ€™ve been meaning to make a year-end gift, thereโ€™s still time.

Your ๐ฌ๐ฎ๐ฉ๐ฉ๐จ๐ซ๐ญ ๐ก๐ž๐ฅ๐ฉ๐ฌ ๐ฎ๐ฌ ๐ซ๐ž๐š๐œ๐ก ๐ฆ๐จ๐ซ๐ž ๐ฉ๐ž๐จ๐ฉ๐ฅ๐ž affected by scleroderma and Degos disease with education, connection and hope.

Scan the ๐๐‘ ๐œ๐จ๐๐ž, give via ๐•๐ž๐ง๐ฆ๐จ @๐’๐ญ๐ž๐Ÿ๐Ÿ๐ž๐ง๐ฌ-๐’๐œ๐ฅ๐ž๐ซ๐จ๐๐ž๐ซ๐ฆ๐š or online:
https://www.paypal.com/donate/?hosted_button_id=CFF8BP5UB8PYJ

๐‘ป๐’‰๐’‚๐’๐’Œ ๐’š๐’๐’– ๐’‡๐’๐’“ ๐’”๐’•๐’‚๐’๐’…๐’Š๐’๐’ˆ ๐’˜๐’Š๐’•๐’‰ ๐’–๐’” ๐’‚๐’๐’… ๐’Ž๐’‚๐’Œ๐’Š๐’๐’ˆ ๐’•๐’‰๐’Š๐’” ๐’˜๐’๐’“๐’Œ ๐’‘๐’๐’”๐’”๐’Š๐’ƒ๐’๐’†.

12/30/2025

Our ๐ƒ๐ž๐œ๐ž๐ฆ๐›๐ž๐ซ ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ“ ๐ง๐ž๐ฐ๐ฌ๐ฅ๐ž๐ญ๐ญ๐ž๐ซ is out, and itโ€™s a good one.

Meet the newest voice shaping scleroderma research and the coordinator behind our global Degos network.

Ever wonder how a rare disease website reaches 11 countries? This issue answers that question and shows how far our reach has grown this year.

Itโ€™s full of stories that show how much momentum and heart this community is carrying into the new year.

Open it by using the QR code or visiting our website: https://tinyurl.com/65urtkh5

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๐’๐ข๐ ๐ง ๐ฎ๐ฉ ๐ก๐ž๐ซ๐ž: https://www.steffens-scleroderma.org/news

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