Tag: resources

• EDS/HSD: Applying for Social Security Disability

  The edited version of a webinar John Rodis and Kathleen Kane did on April 28, 2021 for the Metro DC EDS and HSD Support Group.

  pilarkristine

  May 26, 2023

  Presentations

  CTD, EDS, HSD, resources, SSA, SSDI, SSI

• 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: Pain Management and Pain Conditions

  The latest research in CTDs and Pain Management, and even Pain Conditions (IPS, CRPS, etc.).

  pilarkristine

  March 5, 2023

  research

  cannabis, comorbidities, fibromyalgia, hyperbaric oxygen therapy (HBOT), nerve fibers, pain, Pain Management, research, resources

• 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

• Documentaries and Films

  A collection of documentaries and short films by, for, and about talented CTD patients.

  pilarkristine

  March 5, 2023

  Media and Creativity

  documentary, EDS, resources, stories

• Research Roundup: Mental Health and CTDs

  The latest research in CTDs, Mental Health and Wellness, Autism and other areas of Neurodivergence, listed from most recent (top of list) to older resources (bottom of list).

  pilarkristine

  February 7, 2023

  research

  autism, bipolar, neuodivergence, psychiatric illness, research, resources

• 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