This is where the EDS Joint Effort collaborative connective community shines - when we share.
See the below list for the types of resources we work to gather for you and make available to you. Use the search tools to find resources and/or read within the subpages of this sections for much more specific detailed suggestions provided by our growing member community. In the subpages, we highlight tips to battle insurance, travel, seek accommodations for school and/or work and so much more.

Types of Resources We Gather & A Few Quick Access Links

1. Medical & Diagnostic Resources

• Specialist directories: Lists of physicians experienced in diagnosing and treating EDS, POTS, and MCAS. (in progress)
• Diagnostic checklists: Guides for recognizing the signs of EDS, hypermobility spectrum disorder, or associated conditions.  (See ebooks)
• Medical research and articles: Peer-reviewed studies and accessible medical research or summaries on the latest in EDS, hypermobility, POTS, and MCAS. (throughout site)
• Symptom tracking tools: Apps or printable logs for tracking symptoms, medications, and triggers. (see editable medical trackers and templates here)
• Treatment options: Detailed information on medications, physical therapy, surgery, or other treatments for hypermobility-related conditions. (throughout site and in our newsletters at Substack/Zebras.com)

2. Self-Management & Lifestyle Resources

• Pain management techniques: Resources for managing chronic pain, such as physical therapy exercises, pacing strategies, and heat/cold therapy. (see pain management page)
• Energy management tips: Guides on pacing and managing fatigue, using analogies like battery charging or the spoon theory. (see ebook on pacing)
• Diet and nutrition: Dietary tips and resources for gastrointestinal issues commonly associated with EDS, as well as overall health.
• Assistive devices: Guides to braces, splints, mobility aids, or other tools that help hypermobile patients maintain independence and mobility. (see helpful products list)

3. Emotional & Mental Health Support

• Support groups: Directories for in-person or virtual support groups for EDS patients, caregivers, and families. (See support groups)
• Counseling and therapy resources: Mental health professionals experienced with chronic illness, disability, and grief counseling. (See Psychology Today directory)
• Mindfulness and stress management: Meditation, relaxation techniques, and stress reduction practices tailored to chronic pain and illness. (in progress)

4. Educational & Advocacy Tools

• Patient education resources: Simplified educational guides and infographics explaining EDS, hypermobility, and related comorbidities. (throughout site and newsletter on Substack/Zebras)
• Webinars and virtual seminars: Recorded or live educational sessions with experts in the field of EDS and hypermobility. (watch previous EDS Empower Hour webinars on YouTube)
• Advocacy kits: Tools and templates for advocating for healthcare needs, insurance coverage, disability rights, and workplace accommodations. (see EDS Doctor Prep Toolkit)
• Continuing education for professionals: Resources to educate medical professionals (e.g., teachers, nurses, physical therapists) on EDS and hypermobility.

5. Community & Social Connection

• Online communities: Forums, Facebook groups, or apps where EDS patients can connect with others.
• Mentorship programs: Systems pairing newly diagnosed patients with experienced mentors to help navigate the journey. (in progress)
• Events and conferences: Lists of local, national, and virtual events focused on EDS education and support, like DysConf or BJCSF events.

6. Legal & Financial Resources

• Disability application guidance: Step-by-step guides and legal support for applying for disability benefits.(see ebook)
• Insurance advocacy: Tips and tools for dealing with insurance companies and navigating coverage for specialized treatments and coverage.
• Financial assistance: Information on grants, foundations, or organizations that provide financial aid for medical care, mobility devices, or other essential needs. (see PAF.org financial assistance)

7. Caregiver Resources

• Caregiver guides: Practical tips for those caring for someone with EDS or hypermobility, including self-care strategies for caregivers. (see guide)
• Support groups for caregivers: Online or local groups offering emotional and social support for caregivers.
• Work-life balance resources: Tools and advice for balancing caregiving with personal life and professional responsibilities.

8. Educational Advocacy for Children

• School support tools: Information for parents on how to advocate for accommodations (e.g., 504 plans, IEPs) for children with EDS in school settings. (see guide)
• Continuing education for school nurses and teachers: Professional development modules to raise awareness and improve care for hypermobile children.
  
  

9. Holistic and Integrative Health Approaches

• Alternative therapies: Information on yoga, Pilates, acupuncture, and other integrative approaches that help manage hypermobility symptoms.
• Sleep management tools: Resources for improving sleep hygiene and managing sleep disorders often associated with EDS and related conditions. (e-course coming)

10. Patient Advocacy Organizations

Related advocacy organizations/nonprofits:

• EDS Society: Offers advocacy tools, patient resources, and a helpline for navigating healthcare and insurance issues.
• Dysautonomia International: Provides educational resources and tools for advocating for proper diagnosis and treatment of dysautonomia.
• Bobby Jones CSF: Advocates for patients with Chiari malformation and other EDS-related neurological conditions.
• Patient Advocate Foundation (PAF): Provides case management services, financial aid, and insurance navigation help for chronic illness patients.
• National Organization for Rare Disorders (NORD): Offers advocacy and financial assistance programs for patients with rare diseases, including EDS.
• Genetic and Rare Diseases Information Center (GARD): Offers a database of genetic and rare diseases with resources for patient education and advocacy.

Legal assistance programs:

• Disability Rights Legal Centers: Provides legal help and resources for navigating disability rights, including healthcare and insurance advocacy.
• The Patient Advocate Foundation: Has a legal network that can help with appeal processes for insurance denials and understanding patient rights.
• Health Law Advocates: A nonprofit law firm that provides free legal services to low-income patients experiencing issues with healthcare access and insurance coverage.
• Legal Action Center: Specializes in fighting discrimination in healthcare access for people with disabilities or chronic conditions.

Health policy/legislative advocacy groups:

• Elevate Rare.org: Medical kidnapping and potential accusations of child abuse when medical complications look different to a emergency medical team. Go here when you need help. 
• RareDisease.net: A platform focused on connecting patients, caregivers, and advocates across various rare diseases. They offer legislative advocacy resources to help patients fight for healthcare access and promote rare disease awareness on a national level.
• Global Genes: A leading rare disease advocacy organization that empowers individuals with tools for grassroots advocacy. They offer legislative initiatives, rare disease summits, and training programs for advocates to influence policy at local, state, and federal levels.
• Patients Rising: Dedicated to patient advocacy and policy reform, Patients Rising supports those with chronic or rare conditions in navigating the healthcare system. They offer education on legislative advocacy and encourage involvement in healthcare policy changes to improve patient access to treatments.
• National Organization for Rare Disorders (NORD): NORD is a leading voice in rare disease legislative advocacy. They provide tools for patients to engage in the legislative process, including ways to communicate with lawmakers and participate in rare disease legislative days.
• EveryLife Foundation for Rare Diseases: Focuses on advancing scientific innovation and legislative advocacy for rare diseases. EveryLife empowers patients to take an active role in promoting policy changes that lead to better healthcare access, including their Rare Disease Legislative Advocates (RDLA) program.
• The Rare Advocacy Movement (RAM): A patient-led advocacy organization that champions rare disease patients in policy discussions and legislative efforts. RAM provides resources and platforms for patient voices to influence rare disease policies at the national level.
• Genetic Alliance: Works on policy reform and patient engagement for those affected by genetic disorders, including EDS. Genetic Alliance connects patients with opportunities to participate in healthcare legislation and promote research funding for genetic conditions.
• Rare Action Network: This program, run by NORD, brings together rare disease patients and advocates to promote state-level legislative actions. They provide support and resources for local advocacy efforts, empowering patients to push for better healthcare policies.
• Cure Rare Disease: An organization that focuses on developing therapies for rare genetic disorders and advocates for improved access to innovative treatments. They engage in legislative advocacy to encourage more funding and resources for rare disease research and development.
• The RARE Patient Advocacy Summit (hosted by Global Genes): This annual event provides rare disease patients, caregivers, and advocates with tools and resources for effective legislative advocacy. It also connects them with lawmakers and influencers to push forward rare disease policy changes.
• Rare Voices USA: Focuses on giving rare disease patients a platform to influence public policy and healthcare reform. Rare Voices advocates for equitable access to treatment and research funding through legislative initiatives and partnerships.

These resources and strategies can be incredibly helpful for patients facing healthcare barriers, allowing them to navigate the complex system with the tools and support they need.