The below posts are fromy husband @rarectadvocate.bsky.social - he's a pretty cool guy who posts info about a different rare disease a day. The below posts are about Specific Antibody Deficiency aka. SAD and how they relate to us .
04.04.2025 19:10 — 👍 0 🔁 0 💬 0 📌 0
Zebra Striped Ribbon
If your child has a rare disease and attends a public school in the US, they are entitled to district support through a #504 plan or an #IEP. Ensure they receive the education they deserve.
You may be rare, but you are not alone!
#rareDisease #rareDiseaseAwareness
01.04.2025 13:30 — 👍 2 🔁 1 💬 0 📌 0
His High School career started out with 2 days in school, followed by over 100 at home. He finally started back for 1 period a day 2 weeks ago, and still hasn't made it back every day.
You may be rare, but you are not alone!
#rareDisease #rareDiseaseAwareness
01.04.2025 13:30 — 👍 0 🔁 1 💬 1 📌 0
Today's Rare Disease of the Day (RDoD) hits close to home. My son was diagnosed with #SAD - Specific Antibody Deficiency in 2024. Like many rare diseases, it was a long road to getting a diagnosis.
You may be rare, but you are not alone!
#rareDisease #rareDiseaseAwareness
01.04.2025 13:30 — 👍 1 🔁 1 💬 1 📌 0
Specific Antibody Deficiency (#SAD) is a primary immunodeficiency where individuals have normal antibody levels but can't produce specific antibodies, causing frequent respiratory infections.
Learn more: primaryimmune.org
You may be rare, but you are not alone!
#rareDisease #rareDiseaseAwareness
01.04.2025 14:00 — 👍 1 🔁 1 💬 1 📌 0
Thank you :)💗.
01.04.2025 16:28 — 👍 0 🔁 0 💬 0 📌 0
8 days until Rare Disease Day 2025 ! I challenge everyone to find one person they know who has a rare disease and ask them about it. Their challenges, their joys and everything else in between - go !
20.02.2025 18:08 — 👍 0 🔁 0 💬 0 📌 0
How many people do you know ?
15.02.2025 01:50 — 👍 1 🔁 0 💬 0 📌 0
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Florida Girl. Hereditary Angioedema
Non-profit dedicated to raising the profile of #TwinAnemiaPolycythemiaSequence and supporting research. #TAPSisReal #TAPS #raredisease. Awareness day: March 3rd
tapssupport.com
Advancing prevention, diagnosis and treatment research for the 30 million people living with a rare disease in Europe.
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Co-funded by European Union's #HorizonEU Research & Innovation programme. Views expressed are of authors only.
Our vision is a world in which there is equitable healthcare for everyone
An online hub supporting patient driven research ideas to be realised & flourish. Open to all.
Join the #RareDisease #Research revolution at www.rd-rn.org
* connections * resources *mentoring
NIHR funded, co-created by CamRARE, PLRH & patient experts
Staying ahead in the world of rare disease isn’t a luxury…it’s a necessity. RARE Revolution insider® is a life sciences and rare disease publication for professionals, bridging the divide between industry and the community you serve.
An alliance of non-profit organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Living our best #glutenfree life and sharing our #glutenfreefood journey including #glutenfreerecipes, #glutenfreetips and #glutenfreeproductreviews.
https://glutenfreefoodee.com/
Rare Genomics Institute (RG) is a 501(c)3 non-profit organization committed to filling the unmet needs of patients and families affected by rare diseases.
https://www.raregenomics.org/
Alltrna is the world’s first transfer RNA (tRNA) platform company, and we are unlocking the vast therapeutic potential within #tRNA biology. #StopCodonDisease
Learn more: https://www.alltrna.com/
The Zebra Alliance represents a beacon of hope and solidarity for navigating the challenging waters of Ehlers Danlos Syndrome, Rare Diseases, and Chronic Illness 🩵🦓🩵
Community • Education • Resources • Advocacy & Allies
https://linktr.ee/thezebraalliance
🏳️🌈 he/him • Global Patient Engagement Leader & Medical Communications Specialist • EULAR PARE Committee Chair • ✈️ • 🎭 • 📸
Nonprofit research advocacy org for conditions caused by dysfunctional RAS/MAPK signaling. #rasopathies #raredisease
by Stronach in Pittsburgh
Your source for angioedema news, support, & real stories from the community. Let’s raise AE & HAE awareness together!🎗️
https://linktr.ee/aaaai.org
British Society for Immunology. Keep up to date with news, views and more in #immunology
Email: bsi@immunology.org