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.

๐—” ๐˜€๐—ถ๐—ป๐—ด๐—น๐—ฒ ๐—ฒ๐˜ƒ๐—ฒ๐—ป๐˜ ๐—ฐ๐—ฎ๐—ป ๐—ผ๐—ฝ๐—ฒ๐—ป ๐˜๐—ต๐—ฒ ๐—ฑ๐—ผ๐—ผ๐—ฟ ๐˜๐—ผ ๐˜€๐—ผ๐—บ๐—ฒ๐˜๐—ต๐—ถ๐—ป๐—ด ๐—ฏ๐—ถ๐—ด๐—ด๐—ฒ๐—ฟ.At the Rare Disease Day event at SUNY Buffalo, ๐—›๐—ฎ๐—ป๐—ป๐—ฎ๐—ต ๐—•๐—ผ๐˜„๐—ฒ๐—ป shared ...
04/24/2026

๐—” ๐˜€๐—ถ๐—ป๐—ด๐—น๐—ฒ ๐—ฒ๐˜ƒ๐—ฒ๐—ป๐˜ ๐—ฐ๐—ฎ๐—ป ๐—ผ๐—ฝ๐—ฒ๐—ป ๐˜๐—ต๐—ฒ ๐—ฑ๐—ผ๐—ผ๐—ฟ ๐˜๐—ผ ๐˜€๐—ผ๐—บ๐—ฒ๐˜๐—ต๐—ถ๐—ป๐—ด ๐—ฏ๐—ถ๐—ด๐—ด๐—ฒ๐—ฟ.

At the Rare Disease Day event at SUNY Buffalo, ๐—›๐—ฎ๐—ป๐—ป๐—ฎ๐—ต ๐—•๐—ผ๐˜„๐—ฒ๐—ป shared her work and helped raise visibility for Degos disease and other ultra-rare conditions.

She connected with researchers, advocates and others working to move this important work forward.

๐—ช๐—ฎ๐—ป๐˜ ๐˜๐—ผ ๐˜€๐˜๐—ฎ๐˜† ๐—ฐ๐—น๐—ผ๐˜€๐—ฒ ๐˜๐—ผ ๐˜๐—ต๐—ฒ ๐˜„๐—ผ๐—ฟ๐—ธ ๐—ฏ๐—ฒ๐—ต๐—ถ๐—ป๐—ฑ ๐˜๐—ต๐—ฒ ๐—บ๐—ผ๐—บ๐—ฒ๐—ป๐˜๐˜‚๐—บ? Sign up for our quarterly newsletter:
https://www.steffens-scleroderma.org/news

๐—ช๐—ฎ๐—ป๐˜ ๐˜๐—ผ ๐—น๐—ฒ๐—ฎ๐—ฟ๐—ป ๐—บ๐—ผ๐—ฟ๐—ฒ ๐—ฎ๐—ฏ๐—ผ๐˜‚๐˜ ๐——๐—ฒ๐—ด๐—ผ๐˜€ ๐—ฑ๐—ถ๐˜€๐—ฒ๐—ฎ๐˜€๐—ฒ?
https://www.degosdisease.org/


๐—ฆ๐—ผ๐—บ๐—ฒ ๐—น๐—ฒ๐˜€๐˜€๐—ผ๐—ป๐˜€ ๐—ฑ๐—ผ๐—ปโ€™๐˜ ๐—ฐ๐—ผ๐—บ๐—ฒ ๐—ณ๐—ฟ๐—ผ๐—บ ๐—ฎ ๐—น๐—ฒ๐—ฐ๐˜๐˜‚๐—ฟ๐—ฒ.Our ๐—œ๐—ป๐˜๐—ฒ๐—ฟ๐—ฝ๐—ฟ๐—ผ๐—ณ๐—ฒ๐˜€๐˜€๐—ถ๐—ผ๐—ป๐—ฎ๐—น ๐—˜๐—ฑ๐˜‚๐—ฐ๐—ฎ๐˜๐—ถ๐—ผ๐—ป (๐—œ๐—ฃ๐—˜) program brings future healthcare profession...
04/22/2026

๐—ฆ๐—ผ๐—บ๐—ฒ ๐—น๐—ฒ๐˜€๐˜€๐—ผ๐—ป๐˜€ ๐—ฑ๐—ผ๐—ปโ€™๐˜ ๐—ฐ๐—ผ๐—บ๐—ฒ ๐—ณ๐—ฟ๐—ผ๐—บ ๐—ฎ ๐—น๐—ฒ๐—ฐ๐˜๐˜‚๐—ฟ๐—ฒ.

Our ๐—œ๐—ป๐˜๐—ฒ๐—ฟ๐—ฝ๐—ฟ๐—ผ๐—ณ๐—ฒ๐˜€๐˜€๐—ถ๐—ผ๐—ป๐—ฎ๐—น ๐—˜๐—ฑ๐˜‚๐—ฐ๐—ฎ๐˜๐—ถ๐—ผ๐—ป (๐—œ๐—ฃ๐—˜) program brings future healthcare professionals into real conversations with people living with scleroderma, guided by up to ๐Ÿฑ๐Ÿฌ ๐—ฝ๐—ฎ๐˜๐—ถ๐—ฒ๐—ป๐˜ ๐—ฒ๐—ฑ๐˜‚๐—ฐ๐—ฎ๐˜๐—ผ๐—ฟ๐˜€.

What makes our IPE program unique is how it helps students understand scleroderma better while building clinical reasoning skills for rare and ultra-rare disease care.

This yearโ€™s IPE took place on April 6, and weโ€™re excited to share more in the weeks ahead. Until then, explore the program and stay connected by signing up for our quarterly newsletter.

๐—Ÿ๐—ฒ๐—ฎ๐—ฟ๐—ป ๐—บ๐—ผ๐—ฟ๐—ฒ: https://www.steffens-scleroderma.org/ipe
๐—ฆ๐˜‚๐—ฏ๐˜€๐—ฐ๐—ฟ๐—ถ๐—ฏ๐—ฒ: https://www.steffens-scleroderma.org/news

๐๐ข๐  ๐œ๐จ๐ง๐ฏ๐ž๐ซ๐ฌ๐š๐ญ๐ข๐จ๐ง๐ฌ. ๐“๐ซ๐ฎ๐ฌ๐ญ๐ž๐ ๐ฏ๐จ๐ข๐œ๐ž๐ฌ. ๐‘๐ž๐š๐ฅ ๐ข๐ฆ๐ฉ๐š๐œ๐ญ.At the 16th Amy K. Parrish Scleroderma Patient Education Conference, pati...
04/21/2026

๐๐ข๐  ๐œ๐จ๐ง๐ฏ๐ž๐ซ๐ฌ๐š๐ญ๐ข๐จ๐ง๐ฌ. ๐“๐ซ๐ฎ๐ฌ๐ญ๐ž๐ ๐ฏ๐จ๐ข๐œ๐ž๐ฌ. ๐‘๐ž๐š๐ฅ ๐ข๐ฆ๐ฉ๐š๐œ๐ญ.

At the 16th Amy K. Parrish Scleroderma Patient Education Conference, patients, clinicians and advocates came together for a day of insight, support and connection.

We were especially proud to see two women from our foundationโ€™s leadership at the center of the day.

๐ƒ๐ซ. ๐‰๐ž๐ฌ๐ฌ๐ข๐œ๐š ๐…๐š๐ซ๐ซ๐ž๐ฅ๐ฅ, ๐๐ก๐š๐ซ๐ฆ๐ƒ, one of our medical advisors and a nationally recognized expert in rheumatology pharmacy, delivered the keynote and shared practical guidance on navigating scleroderma medications with confidence.

๐ƒ๐ซ. ๐Š๐š๐ซ๐ž๐ง ๐Š๐ž๐ฆ๐ฉ๐ž๐ซ, ๐Œ๐’๐๐‡, ๐๐ก๐ƒ, longtime advocate and member of our board, helped attendees map their healthcare team, a critical step in managing a complex condition.

Explore the leadership behind this work and learn more about Dr. Farrell and Dr. Kemper on our ๐‹๐ž๐š๐๐ž๐ซ๐ฌ๐ก๐ข๐ฉ ๐ฉ๐š๐ ๐ž: https://www.steffens-scleroderma.org/leadership

Their expertise and commitment continue to inform, empower and strengthen our community. ๐‘๐ž๐š๐ ๐ญ๐ก๐ข๐ฌ ๐ฌ๐ญ๐จ๐ซ๐ฒ ๐š๐ง๐ ๐ž๐ฑ๐ฉ๐ฅ๐จ๐ซ๐ž ๐ญ๐ก๐ž ๐Ÿ๐ฎ๐ฅ๐ฅ ๐Œ๐š๐ซ๐œ๐ก ๐ข๐ฌ๐ฌ๐ฎ๐ž:
https://www.steffens-scleroderma.org/news

๐—ข๐—ป๐—ฒ ๐˜ƒ๐—ผ๐—ถ๐—ฐ๐—ฒ ๐—ถ๐˜€ ๐—ฎ ๐˜„๐—ต๐—ถ๐˜€๐—ฝ๐—ฒ๐—ฟ. ๐—ข๐—ก๐—˜ ๐—ง๐—›๐—ข๐—จ๐—ฆ๐—”๐—ก๐—— ๐—ถ๐˜€ ๐—ฎ ๐—ฅ๐—ข๐—”๐—ฅ!Weโ€™re closing in on ๐Ÿญ,๐Ÿฌ๐Ÿฌ๐Ÿฌ ๐—ณ๐—ผ๐—น๐—น๐—ผ๐˜„๐—ฒ๐—ฟ๐˜€.This milestone means more people lear...
04/17/2026

๐—ข๐—ป๐—ฒ ๐˜ƒ๐—ผ๐—ถ๐—ฐ๐—ฒ ๐—ถ๐˜€ ๐—ฎ ๐˜„๐—ต๐—ถ๐˜€๐—ฝ๐—ฒ๐—ฟ. ๐—ข๐—ก๐—˜ ๐—ง๐—›๐—ข๐—จ๐—ฆ๐—”๐—ก๐—— ๐—ถ๐˜€ ๐—ฎ ๐—ฅ๐—ข๐—”๐—ฅ!

Weโ€™re closing in on ๐Ÿญ,๐Ÿฌ๐Ÿฌ๐Ÿฌ ๐—ณ๐—ผ๐—น๐—น๐—ผ๐˜„๐—ฒ๐—ฟ๐˜€.

This milestone means more people learning about scleroderma and Degos disease. It also means more lived experiences shared and more people standing with this community.

Follow us for real stories, trusted education and research shaping the future of rare disease care. Help push this movement forward.

๐—™๐—ผ๐—น๐—น๐—ผ๐˜„ our page and ๐—ถ๐—ป๐˜ƒ๐—ถ๐˜๐—ฒ someone in your circle to add their voice.

๐‘๐š๐ซ๐ž ๐จ๐ฐ๐ง๐ž๐ ๐ญ๐ก๐ž ๐ง๐ข๐ ๐ก๐ญ.Our ๐˜Š๐˜ฉ๐˜ฆ๐˜ฆ๐˜ณ๐˜ด ๐˜ต๐˜ฐ ๐˜™๐˜ข๐˜ณ๐˜ฆ event on February 27 was a massive success. Thanks to an incredible effort from ...
04/14/2026

๐‘๐š๐ซ๐ž ๐จ๐ฐ๐ง๐ž๐ ๐ญ๐ก๐ž ๐ง๐ข๐ ๐ก๐ญ.

Our ๐˜Š๐˜ฉ๐˜ฆ๐˜ฆ๐˜ณ๐˜ด ๐˜ต๐˜ฐ ๐˜™๐˜ข๐˜ณ๐˜ฆ event on February 27 was a massive success.

Thanks to an incredible effort from patients, physicians, volunteers, sponsors and the community, ๐™ฌ๐™š ๐™จ๐™ช๐™ง๐™ฅ๐™–๐™จ๐™จ๐™š๐™™ ๐™ฉ๐™๐™š $5,000 ๐™ข๐™–๐™ง๐™ !

Together, we turned a night of awareness into a year of impact. Keep the momentum going.

Join our quarterly newsletter for updates on how these funds are moving the work forward

๐๐ž๐ฐ๐ฌ๐ฅ๐ž๐ญ๐ญ๐ž๐ซ ๐ฌ๐ข๐ ๐ง-๐ฎ๐ฉ: https://www.steffens-scleroderma.org/news

Those ๐ฆ๐š๐ฉ ๐ฉ๐ข๐ง๐ฌ tell an important story. Degos disease may be ultra-rare, but the work to build awareness and connect exp...
04/10/2026

Those ๐ฆ๐š๐ฉ ๐ฉ๐ข๐ง๐ฌ tell an important story.

Degos disease may be ultra-rare, but the work to build awareness and connect expertise is global.

๐‹๐ž๐š๐ซ๐ง ๐ฆ๐จ๐ซ๐ž ๐š๐ญ https://www.degosdisease.org/

๐’๐ข๐ ๐ง ๐ฎ๐ฉ ๐Ÿ๐จ๐ซ ๐จ๐ฎ๐ซ ๐ช๐ฎ๐š๐ซ๐ญ๐ž๐ซ๐ฅ๐ฒ ๐ง๐ž๐ฐ๐ฌ๐ฅ๐ž๐ญ๐ญ๐ž๐ซ for updates on the global effort:
https://www.steffens-scleroderma.org/news

This new initiative gave medical students something no textbook can: ๐ญ๐ก๐ž ๐ฉ๐š๐ญ๐ข๐ž๐ง๐ญ ๐ฉ๐ž๐ซ๐ฌ๐ฉ๐ž๐œ๐ญ๐ข๐ฏ๐ž. Hearing directly from peop...
04/08/2026

This new initiative gave medical students something no textbook can: ๐ญ๐ก๐ž ๐ฉ๐š๐ญ๐ข๐ž๐ง๐ญ ๐ฉ๐ž๐ซ๐ฌ๐ฉ๐ž๐œ๐ญ๐ข๐ฏ๐ž.

Hearing directly from people living with Degos left an immediate and lasting impression.

Read the full story in our newsletter, and ๐ฌ๐ข๐ ๐ง ๐ฎ๐ฉ ๐ญ๐จ๐๐š๐ฒ ๐ญ๐จ ๐ซ๐ž๐œ๐ž๐ข๐ฏ๐ž ๐ข๐ญ ๐ช๐ฎ๐š๐ซ๐ญ๐ž๐ซ๐ฅ๐ฒ: https://www.steffens-scleroderma.org/news

Weโ€™re thrilled to welcome ๐…๐š๐ฅ๐ ๐ฎ๐ง๐ข ๐ƒ๐ž๐ฌ๐š๐ข to our board. Her leadership, resilience and commitment to raising awareness for...
04/06/2026

Weโ€™re thrilled to welcome ๐…๐š๐ฅ๐ ๐ฎ๐ง๐ข ๐ƒ๐ž๐ฌ๐š๐ข to our board.

Her leadership, resilience and commitment to raising awareness for scleroderma bring a spark of strength that inspires everyone around her.

Falguni's story is powerful, and her voice is already making an impact. Get to know her and see why weโ€™re so excited to have her on the team.

You can read her full bio in our newest newsletter.

Sign up for our newsletter here: https://www.steffens-scleroderma.org/news

April is ๐•๐จ๐ฅ๐ฎ๐ง๐ญ๐ž๐ž๐ซ ๐€๐ฉ๐ฉ๐ซ๐ž๐œ๐ข๐š๐ญ๐ข๐จ๐ง ๐Œ๐จ๐ง๐ญ๐ก. Every day our volunteers bring heart and steady strength to this mission.Their ti...
04/04/2026

April is ๐•๐จ๐ฅ๐ฎ๐ง๐ญ๐ž๐ž๐ซ ๐€๐ฉ๐ฉ๐ซ๐ž๐œ๐ข๐š๐ญ๐ข๐จ๐ง ๐Œ๐จ๐ง๐ญ๐ก. Every day our volunteers bring heart and steady strength to this mission.

Their time and energy help us reach more families, host special events, share better information and stand with people who are living with rare and difficult diseases.

We are grateful for every person who shows up with compassion and hope.

If you feel called to be part of this work, follow the link to volunteer with us.
https://www.steffens-scleroderma.org/support-us

Our quarterly newsletter is the best way to stay connected to everything happening across our community.Last week we hos...
04/03/2026

Our quarterly newsletter is the best way to stay connected to everything happening across our community.

Last week we hosted the ๐ฐ๐จ๐ซ๐ฅ๐โ€™๐ฌ ๐Ÿ๐ข๐ซ๐ฌ๐ญ ๐ƒ๐ž๐ ๐จ๐ฌ ๐๐š๐ญ๐ข๐ž๐ง๐ญ ๐„๐๐ฎ๐œ๐š๐ญ๐ข๐จ๐ง ๐ˆ๐ง๐ข๐ญ๐ข๐š๐ญ๐ข๐ฏ๐ž. This groundbreaking program gave future dermatologists an eye opening look at Degos Disease.

Faculty at Hofstra were thrilled with the experience and have already expressed interest in hosting an expanded event next year.

We are excited to welcome new board member ๐…๐š๐ฅ๐ ๐ฎ๐ง๐ข ๐ƒ๐ž๐ฌ๐š๐ข. Her experience, perspective and passion for advocacy will strengthen our work in meaningful ways.

Learn more about her here: https://www.steffens-scleroderma.org/leadership

These are only two highlights from the ๐Œ๐š๐ซ๐œ๐ก ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ” ๐๐ž๐ฐ๐ฌ๐ฅ๐ž๐ญ๐ญ๐ž๐ซ, which is filled with Rare Disease Month fundraisers, upcoming events and many other updates from across our community.

๐’๐ญ๐š๐ฒ ๐œ๐จ๐ง๐ง๐ž๐œ๐ญ๐ž๐. Read the full newsletter and sign up to receive it:
https://www.steffens-scleroderma.org/news

If something stands out to you, we would value your perspective in the comments.

Set sail for a great cause!๐—ฆ๐—ฎ๐˜ƒ๐—ฒ ๐˜๐—ต๐—ฒ ๐——๐—ฎ๐˜๐—ฒ: ๐’๐ฎ๐ง๐๐š๐ฒ, ๐‰๐ฎ๐ฅ๐ฒ ๐Ÿ๐Ÿ”, ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ”๐—–๐—ฟ๐˜‚๐—ถ๐˜€๐—ฒ ๐—ณ๐—ผ๐—ฟ ๐—ฎ ๐—–๐˜‚๐—ฟ๐—ฒ is back to support the Steffens Sclerod...
03/31/2026

Set sail for a great cause!

๐—ฆ๐—ฎ๐˜ƒ๐—ฒ ๐˜๐—ต๐—ฒ ๐——๐—ฎ๐˜๐—ฒ: ๐’๐ฎ๐ง๐๐š๐ฒ, ๐‰๐ฎ๐ฅ๐ฒ ๐Ÿ๐Ÿ”, ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ”

๐—–๐—ฟ๐˜‚๐—ถ๐˜€๐—ฒ ๐—ณ๐—ผ๐—ฟ ๐—ฎ ๐—–๐˜‚๐—ฟ๐—ฒ is back to support the Steffens Scleroderma and Degos Disease Foundation, and we can't wait to see you there.

Share this post to encourage your friends and family to join us on the water! ๐—™๐˜‚๐—น๐—น ๐—ฒ๐˜ƒ๐—ฒ๐—ป๐˜ ๐—ฑ๐—ฒ๐˜๐—ฎ๐—ถ๐—น๐˜€ ๐—ฎ๐—ฟ๐—ฒ ๐—ฐ๐—ผ๐—บ๐—ถ๐—ป๐—ด ๐˜€๐—ผ๐—ผ๐—ป.

๐™๐™„๐™๐™Ž๐™ ๐˜ฟ๐˜ผ๐™” ๐™Š๐™ ๐™Ž๐™‹๐™๐™„๐™‰๐™‚ ๐ŸŒทSoftening the edges. Finding the light. Pushing through the cold.Happy Spring to the most resilient...
03/20/2026

๐™๐™„๐™๐™Ž๐™ ๐˜ฟ๐˜ผ๐™” ๐™Š๐™ ๐™Ž๐™‹๐™๐™„๐™‰๐™‚ ๐ŸŒท

Softening the edges.
Finding the light.
Pushing through the cold.

Happy Spring to the most resilient community we know.

Keep blooming and keep going. ๐ŸŒป๐Ÿฉต

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P. O. Box 38037
Albany, NY
12203

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