- NORD- National Organization for Rare Diseases
The Rare Disease Educational Support Program reimburses registration costs for rare disease-specific educational offerings such as workshops, nutrition classes, and conferences, as well as limited financial assistance for travel and lodging costs. Email rdeducate@rarediseases.org or call (860)556-2208 for more information. - NATIONAL AGENCIES OR GROUPS- The ARC of the United States
Each chapter offers support programs and services. Find your local chapter at the
following link: www.thearc.org/find-a-chapter
As an example, the ARC of IL offers a Consumer Stipend Project, which offers grants to enable people with developmental disabilities and their family members to attend conferences of their choice that are directly related to developmental disability issues: www.thearcofil.org/programs - STATE AND/OR REGIONAL Resources
All states have Councils on Developmental Disabilities, and some will fund conference travel. The Dup15q Alliance website has compiled a list of Developmental Disabilities Boards by state at the following link:
https://dup15q.org/state-and-or-regional-table-of-resources/- Additionally, you can view a roster of Developmental Disabilities Boards by State
at the following link: www.nasddds.org/state-agencies/. Click on your state and
then on “county boards” and select your county of residence. If there is no
specific link to a consumer investment/empowerment fund, it does not mean
there is no such fund in your state. Contact the council directly and inquire if they
have available grants to help families & individuals with disabilities to attend
conferences relating to that disability.
- Additionally, you can view a roster of Developmental Disabilities Boards by State
- Angel Flights
Angel Flight is a network of independent regional non-profits (West, East, Central, and Soars are a few) belonging to the Air Charity Network. These organizations coordinate volunteer pilots who use their own small aircraft to fly children free of charge.
The process:- Request a flight for Angel Flight East.
- Medical Release from doctor
- Pilot Matching- once approved your mission is posted and a pilot will accept
the flight.
Key Requirement: Must be able to walk and step up onto the wing of a small plane. - Apply: https://afe.vpoids.org/flight-request
- Angel’s Hands Foundations
Angel’s Hands Foundation may be able to help with conference associated costs via their scholarship program: https://www.angelshands.org/forms - Chive Charities
Chive Charities has helped, and will continue to help, hundreds of deserving people in need across the country by championing the underdogs and focusing on three causes: rare medical diagnoses, first responders, and veterans. Through sharing stories of grit and courage, Chive Charities raises awareness while providing critical support such as therapy equipment and sessions not covered by insurance, handicap-accessible home and car modifications, mobility items, developmental and learning devices, other medically recommended needs, and grants to nonprofit organizations that serve individuals with rare diseases: https://chivecharities.org/ - Patient Advocate Foundation
The Patient Advocate Foundation created a National Financial Resource Directory to
help individuals quickly generate a list of national and regional resources that are dedicated to improving access to quality care and decreasing the medical burden of medical treatment: https://www.patientadvocate.org/explore-our-resources/national-financial-resource-directory/ - Air Care Alliance
Helps patients in need gain access to distant medical care or supportive services by arranging free flights through volunteer pilots:
https://aircarealliance.org/patient-and-medical-transport/ - Mercy Medical Angels (MMA): Your Gateway to Commercial Flights Mercy Medical
Angels is a national non-profit that provides various forms of medical transportation, including commercial airline tickets-often utilizing grants from airlines like Southwest. They serve both children and adults. There must be a financial need to apply.
Website: https://www.mercymedical.org/patients
Submit request on their portal here: https://travel.mercymedical.org/travel-request/step-0 - Children’s Flight of Hope (CFOH): Dedicated to Pediatric Journeys
Specifically focused on helping children and one adult companion reach specialized medical care.
Apply here: https://cfoh.tfaforms.net/97
