Tag: Marfan

• February is Proclaimed Marfan Awareness Month in MA!

  

  Thanks to the efforts of Jon Rodis, Debbie Mozes, and others who dedicated their time, Governor Healey has Proclaimed February 2024 as Marfan Syndrome Month. You can read more about this condition on the CTC Marfan Info Sheet, and be sure to share with your CTD friends! It could save someone’s life. Gratitude to all…

  pilarkristine

  February 22, 2024

  Initiatives, legislation

  CTD, Initiatives, Marfan, news, Proclamation

• Research Roundup: Skin, Muscle, Tissue, Healing

  The latest research regarding skin and other body tissue and healing.

  pilarkristine

  March 11, 2023

  research, treatments

  anesthesia, antibiotics, bacteria, CTD, gut microbes, immune cells, iPS cells, Loeys-Dietz, Marfan, regenerative medicine, research, sedation, skin, soft tissue, surgery

• Research Roundup: Vascular EDS, Marfan, and Loeys-Dietz

  The latest research regarding issues specific to Vascular EDS, Marfan Syndrome and Loeys-Dietz.

  pilarkristine

  March 9, 2023

  research, treatments

  aneurysm, brain vessels, Loeys-Dietz, Losartan, Marfan, vascular, vEDS

• Research Roundup: Eyes/Vision

  The latest research regarding optometry and ophthalmology in CTDs, from newest to oldest.

  pilarkristine

  March 9, 2023

  research, treatments

  CTD, EDS, Loeys-Dietz, Marfan, news, research, resources

• Research Roundup: GI Issues / Gastroenterology

  The latest research in CTDs, GI issues, and gastroenterology.

  pilarkristine

  March 8, 2023

  research, treatments

  biome, CBD, CTD, EDS, feeding tube, gastroparesis, GI, gut, Loeys-Dietz, Marfan, microbiome, news, research, resources, stories

• Interviews of Note

  Interviews featuring some of the top professionals in the world of CTDs. Note: this list is not an exhaustive one! Be sure to follow the links here to find new interview and podcast resources, and check out our Resource page.

  pilarkristine

  March 6, 2023

  Healthcare Profession, research, treatments

  CTD, doctors, EDS, healthcare, Loeys-Dietz, Marfan, news, research, resources, stories, treatments

• Research Roundup: Genetics

  The latest research in CTDs and Genetics, listed from most recent (top of list) to older resources (bottom of list).

  pilarkristine

  March 5, 2023

  research

  AI, cardiology, CTD, diversity and inclusion, DNA, EDS, genetic engineering, genetic mutations, Genetics, genome, genome sequencing, Loeys-Dietz, Marfan, rare conditions, Raynauds, research, resources

• Photo Contest: Our Diversity is our Strength

  

  We are not just Zebras, are we? This contest will highlight our symbolic strengths, feelings, and skills by way of the animals we find in our lives that inspire us and keep us going.

  pilarkristine

  February 2, 2023

  Photo Contest

  CTD, EDS, Loeys-Dietz, Marfan, stories, support group

• Professional Membership

  Why should a Doctor, Researcher, Healthcare Professional, Med Student, Hospital Program Administrator or Legislator join our Group? The answer is simple!

  pilarkristine

  January 26, 2023

  Membership

  advocacy, CTD, EDS, Initiatives, legislation, Loeys-Dietz, Marfan, news, resources, stories, support group, updates

• Individual Membership

  If you are interested in joining as an individual who’d like the camaraderie, support, and education that our group provides, please fill in this short form.

  pilarkristine

  January 26, 2023

  Membership

  advocacy, CTD, EDS, Initiatives, legislation, Loeys-Dietz, Marfan, news, resources, stories, support group, updates