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Initiatives and Projects

List of past, current and future initiatives, programs and projects:

  • Dedicated HelpLine with extensive options for receiving help – email, open phone line, and appointment scheduling.
  • The 1st e-Learning Platform to Provide Educational Solutions (ie. “Courses” – developed & in development) for Patients & Providers – launching any moment!
  • Abstract Submission for the 2018 Integrative Medical Conference on ‘Mind-Body Strategies for Hypermobility & Chronic Pain’ – Accepted for post presentation at May 2018 conference in Baltimore, MD.
  • The Development & Publishing of Digital & Print Educational Resources, including books, brochures, patient education resources for providers
  • Education & Continuing Medical Education (CMEs) Activities & Conferences For Healthcare Providers
  • Education, Resources & Materials for Educators & Caregivers
  • Global Alliance for Hypermobility Related Disorders (GAHRD) – a Professional Network & Private Forum For Providers\Research, Development & Implementation of Integrative Health Education Programs to Help Patients Live Well
  • Virtual & In-Person Classes, Support Groups, Conferences & Retreats
  • The “Just 5 Minutes” Initiative – “Motivation for life, and mission to heal, restore and empower the human spirit – one yoga mat at a time. #Just5Minutes at a time.” Mission & Fundraising Initiative to Help Restore Function & Promote Patient Self-Empowerment in Their Healthcare

The “Just 5 Minutes” initiative is about creating a movement. It’s about spreading awareness through a shared message. It’s about working together to help build momentum and the motivation to do something for 5 minutes each day — because something is better than nothing.

The “Just 5 Minutes” mission is a program developed to help provide yoga mats and other necessary PT and home exercise equipment for those living with EDS and other hypermobility spectrum disorders.

  • Personal Wellness & Movement Education & Guidance Available for Individuals & Families – Tax-Exempt Fees are Determined by a Sliding Scale or Based on Need. Scholarships are available. Please send email to [email protected]lness.org for more information.
  • Referral Networks for Providers & Patients
  • Conference Attendance – Guest Speaking & Awareness/Vendor Table, including Rare Disease Week on Capital Hill & Rare Disease Day at NIH
  • Online Group Support via Facebook Groups & Private Community Forums on EDS Wellness’ website
  • Local & Virtual Movement-focused Fundraisers , including the 1st Active EDS Community Fundraiser – the “EDS Ride for a Cause,” and Virtual Fundraisers with Charity Footprints, including FitBit Integration (planned for sometime in 2018)
  • EDS Wellness’ Living Well Swag Store – both fun and useful items for living well, including gift certificates & patient sponsorship grants.
  • Continued Partnership & Collaboration with Like-minded Nonprofits, and expand on our alliance of sister organizations focused on comorbid conditions and public health initiatives
  • Focus on education for the dance population and other high-risk athletic communities
  • Moving Naturally with Hypermobility Seminar – seminars put together with DPTs that focus on physical therapy, exercise, and natural movement approaches for hypermobility syndromes. The idea is to help people focus on how they can help themselves at home – move better, etc. and also find proper resources or a PT.
  • Patient & Family Advocacy, support group leading training, other health education programs
  • Mind-Body classes and educational courses focused on movement, nutrition and mindfulness strategies for living well while living with a chronic illness
  • Integrative Health and Wellness Conferences – Wellapalooza
  • EDS Integrative Healing Brochure
  • EDS Ride for a Cause
  • Patient Education Videos in collaboration with community physicians
  • EDS and Kids e-book (will be released any day!)
  • Living with EDS/Hypermobility program with local wellness centers
  • Research initiatives on integrative therapies
  • Provider HelpLine Consulting Appointments for Patients & Caregivers

Looking Ahead:

  • Fostering Better Patient-Provider dynamics & communication
  • Continued outreach & eduction to high-risk populations such as dance, yoga, etc
  • Investment & Focus on Progressive, Virtual Options for EDUCATION, DIAGNOSIS & SOLUTIONS
    For Providers & Patients
  • Public Health Campaign
  • Virtual Conferences & Events for Patients & Providers
  • Grand Rounds & Medical School Education
  • Spanish version of our new EDS Integrative Healing Brochure
  • Mast Cell Activation Syndrome Brochure
  • Gala fundraiser – TBD
  • Patient Education Videos in collaboration with community physicians
  • EDS and Kids e-book (will be released any day!)
  • Living with EDS/Hypermobility program with local wellness centers
  • Research initiatives on integrative therapies
  • Telemedicine Options for Providers & Allied Healthcare Providers
  • Dedicated Scholarship Fund to Help Patients See & Travel to Community Specialists
  • Collaborate with Public Health & Health Education Organizations
  • Collaborate with Pharmaceutical & Medical Device Companies
  • Online (& in print), easy to use & reputable patient screening questionnaire – Compilation of Online Data Submitted Anonymously Would be Used for Research Purposes (with permission & signed waiver)
  • Yes, we had and plan to have an App for this 😉

 

Watch our 2017 Year In Review Video to See What We’ve Already Accomplished & How Far We’ve Come!

Click on EDS Wellness 2017 – a Year in Review.

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