Rare Disease Advisor
@rarediseaseadvisor.bsky.social
Trusted knowledge base of practical information and resources focused on treating and diagnosing #RareDisease.
https://www.rarediseaseadvisor.com/
https://www.rarediseaseadvisor.com/
#PFFSummit: José Vázquez, 55, PF patient and advocate, describing his advocacy work Nov. 15 during the 2025 PFF Summit in Chicago.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #PatientAdvocacy
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #PatientAdvocacy
November 15, 2025 at 8:20 PM
#PFFSummit: José Vázquez, 55, PF patient and advocate, describing his advocacy work Nov. 15 during the 2025 PFF Summit in Chicago.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #PatientAdvocacy
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #PatientAdvocacy
#PFFSummit: Ayodeji Adegunsoye, MD, PhD, associate director of the Interstitial Lung Disease Program at UChicago Medicine, speaking Nov. 14 at the PFF Summit in Chicago.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #COVID #Telehealth #ILD
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #COVID #Telehealth #ILD
November 15, 2025 at 6:30 PM
#PFFSummit: Ayodeji Adegunsoye, MD, PhD, associate director of the Interstitial Lung Disease Program at UChicago Medicine, speaking Nov. 14 at the PFF Summit in Chicago.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #COVID #Telehealth #ILD
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #COVID #Telehealth #ILD
#PFFSummit: @bhavikakaulmd.bsky.social speaking Nov. 15 at the 2025 PFF Summit in Chicago on “Understanding the Hidden Triggers and Management of Exposure-Related ILDs.”
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #AgentOrange #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #AgentOrange #MedSky
November 15, 2025 at 6:20 PM
#PFFSummit: @bhavikakaulmd.bsky.social speaking Nov. 15 at the 2025 PFF Summit in Chicago on “Understanding the Hidden Triggers and Management of Exposure-Related ILDs.”
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #AgentOrange #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #AgentOrange #MedSky
#PFFSummit: Susan Jacobs, RN, speaking Nov. 15 at the 2025 PFF Summit in Chicago about the Supplemental Oxygen Access Reform (SOAR) legislation now pending in Congress.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #SOAR #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #SOAR #MedSky
November 15, 2025 at 4:00 PM
#PFFSummit: Susan Jacobs, RN, speaking Nov. 15 at the 2025 PFF Summit in Chicago about the Supplemental Oxygen Access Reform (SOAR) legislation now pending in Congress.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #SOAR #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #SOAR #MedSky
#PFFSummit: Harold Collard, MD, professor of medicine and health policy at @ucsfhealth.bsky.social speaking Nov. 15 at the 2025 PFF Summit in Chicago.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #HealthPolicy
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #HealthPolicy
November 15, 2025 at 3:45 PM
#PFFSummit: Harold Collard, MD, professor of medicine and health policy at @ucsfhealth.bsky.social speaking Nov. 15 at the 2025 PFF Summit in Chicago.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #HealthPolicy
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #HealthPolicy
#PFFSummit: James Fraser, PhD, of @ucsfhealth.bsky.social, speaking Nov. 15 at the PFF Summit in Chicago on “How AI is Transforming Pre-Clinical Drug Discovery.” @fraserlab.com
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #AI #Pulmonology #MedTech
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #AI #Pulmonology #MedTech
November 15, 2025 at 3:35 PM
#PFFSummit: James Fraser, PhD, of @ucsfhealth.bsky.social, speaking Nov. 15 at the PFF Summit in Chicago on “How AI is Transforming Pre-Clinical Drug Discovery.” @fraserlab.com
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #AI #Pulmonology #MedTech
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #AI #Pulmonology #MedTech
#PFFSummit: Jessica Shore, PhD, senior VP of clinical affairs and quality at the Pulmonary Fibrosis Foundation, speaking Nov. 15 at the PFF Summit in Chicago.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #MedSky
November 15, 2025 at 3:25 PM
#PFFSummit: Jessica Shore, PhD, senior VP of clinical affairs and quality at the Pulmonary Fibrosis Foundation, speaking Nov. 15 at the PFF Summit in Chicago.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #MedSky
#PFFSummit: Karen Smoot of Albuquerque, New Mexico, PFF patient ambassador who lives with both #IdiopathicPulmonaryFibrosis and #PulmonaryArterialHypertension. Smoot, 79, spoke Nov. 14 at the 2025 PFF Summit in Chicago
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #MedSky
November 15, 2025 at 3:00 PM
#PFFSummit: Karen Smoot of Albuquerque, New Mexico, PFF patient ambassador who lives with both #IdiopathicPulmonaryFibrosis and #PulmonaryArterialHypertension. Smoot, 79, spoke Nov. 14 at the 2025 PFF Summit in Chicago
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #MedSky
#PFFSummit: Imre Noth, MD, professor at the University of Virginia in Charlottesville, speaking Nov. 14 at the 2025 PFF Summit in Chicago.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #MedSky
November 14, 2025 at 5:35 PM
#PFFSummit: Imre Noth, MD, professor at the University of Virginia in Charlottesville, speaking Nov. 14 at the 2025 PFF Summit in Chicago.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #Pulmonology #MedSky
#PFFSummit: Marilyn Glassberg, MD, professor at @loyolachicago.bsky.social’s Stritch School of Medicine, speaking Nov. 14 at the 2025 PFF Summit in Chicago.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #MedSky
November 14, 2025 at 4:10 PM
#PFFSummit: Marilyn Glassberg, MD, professor at @loyolachicago.bsky.social’s Stritch School of Medicine, speaking Nov. 14 at the 2025 PFF Summit in Chicago.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #MedSky
#PFFSummit: Donna Dinkin, DrPH, a PFF patient ambassador with #Scleroderma-associated #InterstitialLungDisease (ILD), speaking Nov. 14 at the 2025 PFF Summit in Chicago.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #MedSky
November 14, 2025 at 3:25 PM
#PFFSummit: Donna Dinkin, DrPH, a PFF patient ambassador with #Scleroderma-associated #InterstitialLungDisease (ILD), speaking Nov. 14 at the 2025 PFF Summit in Chicago.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #MedSky
#PFFSummit: Karen Mancera-Cuevas, DrPH, senior director of health equity at the National Health Council, speaking Nov. 14 at the 2025 PFF Summit in Chicago.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #ClinicalTrial #PFF #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #ClinicalTrial #PFF #MedSky
November 14, 2025 at 3:13 PM
#PFFSummit: Karen Mancera-Cuevas, DrPH, senior director of health equity at the National Health Council, speaking Nov. 14 at the 2025 PFF Summit in Chicago.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #ClinicalTrial #PFF #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #PulmonaryFibrosis #ClinicalTrial #PFF #MedSky
💭 Alithea Athans, CAD Contributor, reflects on the emotional journey of living with a rare disease — and what it means to grieve your past self.
Read more ➡️ https://bit.ly/47WriPI
#ColdAgglutininDisease #CAD #RareDisease #RareVoices
Read more ➡️ https://bit.ly/47WriPI
#ColdAgglutininDisease #CAD #RareDisease #RareVoices
November 13, 2025 at 8:09 PM
💭 Alithea Athans, CAD Contributor, reflects on the emotional journey of living with a rare disease — and what it means to grieve your past self.
Read more ➡️ https://bit.ly/47WriPI
#ColdAgglutininDisease #CAD #RareDisease #RareVoices
Read more ➡️ https://bit.ly/47WriPI
#ColdAgglutininDisease #CAD #RareDisease #RareVoices
Emily Felt, PWS Contributor and mom to a 13-year-old with #PWS, shares how she’s found strength and joy in her caregiving journey.
Read more ➡️ https://bit.ly/47UzjVC
#PraderWilliSyndrome #PWS #RareDisease #Caregiver
Read more ➡️ https://bit.ly/47UzjVC
#PraderWilliSyndrome #PWS #RareDisease #Caregiver
November 12, 2025 at 9:07 PM
Emily Felt, PWS Contributor and mom to a 13-year-old with #PWS, shares how she’s found strength and joy in her caregiving journey.
Read more ➡️ https://bit.ly/47UzjVC
#PraderWilliSyndrome #PWS #RareDisease #Caregiver
Read more ➡️ https://bit.ly/47UzjVC
#PraderWilliSyndrome #PWS #RareDisease #Caregiver
💭 “Should patients with HAE get vaccinated?”
In her latest column, #HAE Contributor Aysha Bagley shares how self-education and connection help her manage #HereditaryAngioedema (HAE).
Read here➡️ https://bit.ly/43oaYpJ
#RareDisease #PatientAdvocacy #RareSky
In her latest column, #HAE Contributor Aysha Bagley shares how self-education and connection help her manage #HereditaryAngioedema (HAE).
Read here➡️ https://bit.ly/43oaYpJ
#RareDisease #PatientAdvocacy #RareSky
November 11, 2025 at 9:05 PM
💭 “Should patients with HAE get vaccinated?”
In her latest column, #HAE Contributor Aysha Bagley shares how self-education and connection help her manage #HereditaryAngioedema (HAE).
Read here➡️ https://bit.ly/43oaYpJ
#RareDisease #PatientAdvocacy #RareSky
In her latest column, #HAE Contributor Aysha Bagley shares how self-education and connection help her manage #HereditaryAngioedema (HAE).
Read here➡️ https://bit.ly/43oaYpJ
#RareDisease #PatientAdvocacy #RareSky
#TLM25: Michael Schilsky, MD, an expert on Wilson disease and professor at the @yaleschoolofmed.bsky.social, speaking Nov. 10 at the @aasldnews.bsky.social 2025 conference in Washington, D.C.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #WilsonDisease
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #WilsonDisease
November 10, 2025 at 4:07 PM
#TLM25: Michael Schilsky, MD, an expert on Wilson disease and professor at the @yaleschoolofmed.bsky.social, speaking Nov. 10 at the @aasldnews.bsky.social 2025 conference in Washington, D.C.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #WilsonDisease
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #WilsonDisease
#TLM25: Andrea Wilson Woods, founder of @bluefaeryliver.bsky.social, a nonprofit organization representing patients with #HepatocellularCarcinoma (HCC). Wilson Woods, whose younger sister, Adrienne, died of the disease in 2023, spoke Nov. 9 at @aasldnews.bsky.social 2025
#RareDisease #Hepatology
#RareDisease #Hepatology
November 10, 2025 at 3:15 PM
#TLM25: Andrea Wilson Woods, founder of @bluefaeryliver.bsky.social, a nonprofit organization representing patients with #HepatocellularCarcinoma (HCC). Wilson Woods, whose younger sister, Adrienne, died of the disease in 2023, spoke Nov. 9 at @aasldnews.bsky.social 2025
#RareDisease #Hepatology
#RareDisease #Hepatology
#TLM25: “Andrew Grimm, MD, PhD, vice-president of global clinical development for inborn errors of metabolism at Ultragenyx. Dr. Grimm spoke Nov. 10 during @aasldnews.bsky.social 2025 at a panel about #WilsonDisease.
Image & quote taken by Larry Luxner
#RareDisease #Hepatology #GeneTherapy
Image & quote taken by Larry Luxner
#RareDisease #Hepatology #GeneTherapy
November 10, 2025 at 2:56 PM
#TLM25: “Andrew Grimm, MD, PhD, vice-president of global clinical development for inborn errors of metabolism at Ultragenyx. Dr. Grimm spoke Nov. 10 during @aasldnews.bsky.social 2025 at a panel about #WilsonDisease.
Image & quote taken by Larry Luxner
#RareDisease #Hepatology #GeneTherapy
Image & quote taken by Larry Luxner
#RareDisease #Hepatology #GeneTherapy
#TLM25: Alice Williams, director of the Wilson Disease Association’s Canada chapter. Williams, who has two children with Wilson, spoke Nov. 9 at @aasldnews.bsky.social 2025 in Washington, D.C.
Image & quote taken by Senior Correspondent, Larry Luxner
#RareDisease #Hepatology #WilsonDisease #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner
#RareDisease #Hepatology #WilsonDisease #MedSky
November 9, 2025 at 9:10 PM
#TLM25: Alice Williams, director of the Wilson Disease Association’s Canada chapter. Williams, who has two children with Wilson, spoke Nov. 9 at @aasldnews.bsky.social 2025 in Washington, D.C.
Image & quote taken by Senior Correspondent, Larry Luxner
#RareDisease #Hepatology #WilsonDisease #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner
#RareDisease #Hepatology #WilsonDisease #MedSky
#TLM25: Laura Kulik, MD, transplant hepatologist at @nuintmed.bsky.social, in Chicago, speaking on systemic therapy for #HCC at @aasldnews.bsky.social 2025 in Washington, D.C.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #HepatocellularCarcinoma #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #HepatocellularCarcinoma #MedSky
November 9, 2025 at 4:37 PM
#TLM25: Laura Kulik, MD, transplant hepatologist at @nuintmed.bsky.social, in Chicago, speaking on systemic therapy for #HCC at @aasldnews.bsky.social 2025 in Washington, D.C.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #HepatocellularCarcinoma #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #HepatocellularCarcinoma #MedSky
#TLM25: @anjanapillaimd.bsky.social, professor of medicine at the @uchicagomedicine.bsky.social speaking Nov. 9 about #HepatocellularCarcinoma (HCC) at @aasldnews.bsky.social 2025 in Washington, D.C
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #MedSky #HCC
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #MedSky #HCC
November 9, 2025 at 3:00 PM
#TLM25: @anjanapillaimd.bsky.social, professor of medicine at the @uchicagomedicine.bsky.social speaking Nov. 9 about #HepatocellularCarcinoma (HCC) at @aasldnews.bsky.social 2025 in Washington, D.C
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #MedSky #HCC
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #MedSky #HCC
#TLM25: Francis Collins, MD, PhD, former director of the National Institutes of Health, speaking Nov. 8 at Washington, D.C. @aasldnews.bsky.social's 2025 conference in Washington, D.C.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #Healthcare #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #Healthcare #MedSky
November 8, 2025 at 11:15 PM
#TLM25: Francis Collins, MD, PhD, former director of the National Institutes of Health, speaking Nov. 8 at Washington, D.C. @aasldnews.bsky.social's 2025 conference in Washington, D.C.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #Healthcare #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #Healthcare #MedSky
#TLM25: Grace L. Su, MD, president of the American Association for the Study of Liver Diseases, speaking Nov. 8 at the @aasldnews.bsky.social's 2025 conference in Washington, D.C.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #LiverDisease
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #LiverDisease
November 8, 2025 at 11:00 PM
#TLM25: Grace L. Su, MD, president of the American Association for the Study of Liver Diseases, speaking Nov. 8 at the @aasldnews.bsky.social's 2025 conference in Washington, D.C.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #LiverDisease
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #LiverDisease
#TLM25: Bridgette McNally, DO, of @mayoclinic.org Arizona, during a Nov. 8 debate at @aasldnews.bsky.social 2025 in Washington, D.C., on the pros and cons of living-donor liver transplantation.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #MedSky
November 8, 2025 at 9:47 PM
#TLM25: Bridgette McNally, DO, of @mayoclinic.org Arizona, during a Nov. 8 debate at @aasldnews.bsky.social 2025 in Washington, D.C., on the pros and cons of living-donor liver transplantation.
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #MedSky
#TLM25: Aleksander Krag, MD, PhD, gastroenterology professor of the University of Southern Denmark, speaking Nov. 8 about alpha-1 antitrypsin deficiency (#AATD) at @aasldnews.bsky.social 2025
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #Alpha1 #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #Alpha1 #MedSky
November 8, 2025 at 7:00 PM
#TLM25: Aleksander Krag, MD, PhD, gastroenterology professor of the University of Southern Denmark, speaking Nov. 8 about alpha-1 antitrypsin deficiency (#AATD) at @aasldnews.bsky.social 2025
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #Alpha1 #MedSky
Image & quote taken by Senior Correspondent, Larry Luxner.
#RareDisease #Hepatology #Alpha1 #MedSky