Resources
Please note that Periodic Paralysis International/HKPP Listserv is not in any way associated with the companies or organizations referenced below, and we do not endorse their services. The organizations/services are provided strictly for informational purposes and are presented only as possible resources for patients. Further, the information below is not intended to be a comprehensive listing of all available programs.
Resources are organized by country
Australia
Australian Disability Pension
Disability Support Pension The Disability Support Pension is a payment for people whose physical, intellectual or psychiatric impairment prevents them from working, or for people who are permanently blind.
Australian Human Rights and Equal Opportunity Commission Information on human rights and disability discrimination in Australia
Australia Patient's Air Transport
Angel Flight Australia: A charity that co-ordinates non emergency flights for financially and medically needy people. All flights are free and may involve patients or compassionate carers travelling to or from medical facilities anywhere in Australia.
MDA
Muscular Dystrophy Association of Australia
Independent Living Centre
A non-profit community service organisation which provides impartial, expert advice on equipment, building and design, access and resources for people with disabilities.
Medical Safety Net
PBS safety net for medications
Medicare safety net is designed to help people who visit the doctor often or have regular tests. It means that once they reach a safety net threshold, visits to the doctor tests may cost less.
Canada
Information on Drug Reimbursement Programs
Canadian Health Plans by Province
Ontario Canada: Trillium Drug Plan for Ontario residents who have a valid Ontario Health Card and who have high prescription drug costs in relation to their net household income.
Air Transport for Medical Appointments
Hope Air: Our vision is to ensure that no Canadian is denied medical care for inability to afford air travel. We arrange free flights to recognized health facilities for medical treatment unavailable in a patient’s home community.
Angel Flight British Columbia: Providing non-emergency transport for patients within British Columbia
Disability and Human Rights
Canadian Human Rights Commision
Ontarians with Disabilities Act
Ontarians with Disabilities Act Committee a voluntary coalition of individuals and community organizations who have united to secure the passage in Ontario of a new law which would achieve a barrier-free society for persons with disabilities.
Ontario Human Rights Commission Excellent overview of disability rights in Ontario.
The Canadian Council on Rehabilitation and Work Provides a variety of services to Canadians with disabilities.
Disability Rights in Canada: A Virtual Museum
India
Muscular Dystrophy Association in India
International MDA Links
Muscular Dystrophy Links around the world
New Zealand
New Zealand Disability Pension
Disability Allowance The Disability Allowance is for people who have a long-term disability and need ongoing medical care and help with everyday tasks. It is paid to help meet some of your extra costs.
Burwood Academy of Independent Living
The New Zealand Journal of Medicine Scroll down for an article on Thyrotoxic PP in a young Maori Man
The United Kingdom
UK Social Service
Department for Work and Pensions Provides a range of benefits and services for people who are sick or disabled.
UK Medical
London Hospital of Neurology and Neurosurgery
United Kingdom Patient Transport
Ambicar Transport is available to all appointments in the NHS hospitals, it can be arranged through your GP. (No web site.)
USA
Help with cost of meds
WalMart Pharmacies offer a 30 day supply of over 300 generic medicines for $4.00.
Partnership for Prescription Assistance A program from a group of pharmaceutical companies which supplies medications at greatly reduced costs or free, depending on the manufacturer and medication.
RxHope A program sponsored by a group of pharmaceutical companies which offers medications at low or no cost to uninsured, low-income or financially vulnerable families.
The Medicine Program Offers a discount card free of charge that can be used at 35,000 participating pharmacies in the US. With this card the family can buy prescriptions at up to a 65% discount. Not all discounts are this deep, some are 10-12%. Other information about accessing health care, insurance etc. at reduced cost also available at this site.
Patient's Rights and Consumer Info
The Georgetown University Health Policy Institute has written A CONSUMER GUIDE FOR GETTING AND KEEPING HEALTH INSURANCE for each state and the District of Columbia.
The Center on Medical Record Rights and Privacy is dedicated to raising public awareness of the rights and responsibilities associated with medical records and other health information, including, Getting Your Medical Records
The U.S. Equal Employment Opportunity Commission Information on the Laws pertaining to Disability Discrimination.
US Social Security
- Social Security Online The official Web site of the U.S. Social Security Administration; contains general Social Security information as well as links to SSA programs/information.
- Social Security Disability Benefits brochure This brochure addresses the following questions: what are disability benefits, who can get SS disability benefits, how and when a person should apply, when a person can get Medicare, etc.
- Social Security Benefit Publications Social Security's electronic publications; offers an introduction to the Social Security program, disability benefits, retirement benefits, survivor benefits, supplemental security income programs, etc.
- Social Security Online - Disability & SSI Social Security information for those already receiving disability benefits or SSI.
- Social Security Online - Disability Programs Social Security information relating to benefits for people with disabilities. Includes how to apply for benefits, what to do if you're already receiving benefits, etc.
US Medical Transport:
MMA Mercy Medical Airlift Charitable Air Transportation1-888-675-1405, Mercy Medical Airlift (MMA) is a nonprofit organization dedicated to serving people in situations of compelling human need through the provision of charitable air transportation. MMA is totally supported through charitable giving and the services of volunteer pilots and office assistants.
Angel Flights
Angel Flights is a volunteer corps of private pilots and "Earth Angels" who combine a love of flying with the spirit of grassroots volunteerism by flying patients and their families to the critical health care they need. Their mission is to ensure that no patient in need is denied access to distant specialized medical evaluation, diagnosis, treatment, or rehabilitation for lack of a means of long-distance medical air transportation.
- Angel Flight NE: As far north as Maine, as far west as Minnesota and as far south as Florida and Louisiana. Into Eastern Canada occasionally:
- Angel Flight Westcovers flights originating in the Western States: Alaska, Arizona, California, Colorado, Idaho, Hawaii, Montana, New Mexico, Nevada, Oregon, Utah, Washington, Wyoming
- Angel Flight Central: Midwestern States
- Angel Flight Central: Texas, Oklahoma, Arkansas, Louisiana, New Mexico, Mississippi and Tennessee.
- Angel Flight Mid-Atlantic: District of Columbia, Delaware, Kentucky, Maryland, Michigan, North Carolina, Ohio, Pennsylvania, Tennessee, Virginia and West Virginia.
- Angel Flights Southeast: South Carolina, Florida, Alabama, Georgia, Florida, some parts of Louisiana.
Muscular Dystrophy Association USA
MDA USA is a national voluntary organization dedicated to conquering more than 40 neuromuscular diseases including periodic paralysis. Through some 235 hospital-affiliated clinics, MDA offers quality medical care from doctors, nurses and therapists experienced in dealing with neuromuscular diseases. These clinics also serve as sites for clinical trials of the latest experimental therapies and drugs. Services to enhance mobility and independent living are available in each community through MDA’s local network of chapters and field offices.