North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition
http://www.naspghan.org
The mission of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition is to advance understanding of normal development, physiology, and pathophysiology of diseases of the gastrointestinal tract and liver in children. They also seek to improve quality of care by fostering the dissemination of this knowledge through scientific meetings, professional and public education, and policy development. They serve as an effective voice for members and the profession.
Partnership to Fight Chronic Disease
http://www.fightchronicdisease.org
The Partnership to Fight Chronic Disease (PFCD) is a coalition of hundreds of patient, provider, community, business, labor groups, and health policy experts committed to raising awareness about chronic disease.
Patient Access Network (PAN)
https://panfoundation.org
PAN is an independent non-profit organization that provides assistance to underinsured patients for their out-of-pocket expenses for life-saving medications.
Project Sleep
http://project-sleep.com
Project Sleep is a non-profit organization run by narcolepsy advocate Julie Flygare. Its mission focuses on raising awareness about sleep health and sleep disorders.
Rheumatoid Patient Foundation
http://rheum4us.org
The Rheumatoid Patient Foundation provides a complete understanding of the disease for health professionals and the public. They seek to provide comprehensive education on how rheumatoid will impact patients’ relationships, medical care, employment, and health insurance.
Scleroderma Foundation
http://www.scleroderma.org
The Scleroderma Foundation is the national organization for people with scleroderma and their families and friends. Their three-fold mission includes helping to support patients and their families who are coping with this disease through mutual support programs, peer counseling, physician referrals, and educational information. They also promote public awareness through patient and health professional seminars, literature, and publicity campaigns. Their hope is to stimulate and support research to improve treatment and ultimately find the cause of and cure for scleroderma and related diseases.
Sjögren’s Syndrome Foundation
http://www.sjogrens.org
Founded in 1983, the SSF provides patients with practical information and coping strategies that minimize the effects of Sjögren’s. In addition, the foundation is the clearing house for medical information and is the recognized national advocate for Sjögren’s. The foundation’s mission is to educate patients and their families about Sjögren’s, increase public and professional awareness of Sjögren’s, and encourage research into new treatments and a cure.
Syndromes Without a Name USA
http://www.undiagnosed-usa.org
Syndromes Without a Name USA (SWAN USA) is a non-profit organization that offers support, information, and advice to families of children living with an undiagnosed syndrome, unknown diagnosis, or mystery diagnosis.
The Undiagnosed Disease Program
http://rarediseases.info.nih.gov
The Undiagnosed Diseases Program (UDP) is part of the NIH Common Fund initiative which focuses on the most puzzling medical cases at the NIH Clinical Center in Bethesda, Maryland. It was organized by the National Human Genome Research Institute (NHGRI), the NIH Office of Rare Diseases Research (ORDR), and the NIH Clinical Center. Many medical specialties from other NIH research centers and institutes contribute the expertise needed to conduct the program, including endocrinology, immunology, oncology, dermatology, dentistry, cardiology, and genetics.
Government Resources and Financial Assistance
AbbVie Patient Assistance Foundation
http://www.abbviepaf.org
This foundation provides AbbVie medicines at no cost to people experiencing financial difficulties.
American Hospital Association: Patient Bill of Rights
http://www.aha.org
AHA’s Patients’ Bill of Rights brochure informs patients about what they should expect during their hospital stay with regard to their rights and responsibilities. The brochure is available in multiple languages.
Americans with Disabilities Act
http://www.ada.gov
This site educates readers on The Americans with Disabilities Act (ADA) which was signed into law on July 26, 1990 by President George H. W. Bush. The ADA is one of America’s most comprehensive pieces of civil rights legislation that prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to enjoy employment opportunities, purchase goods and services, and to participate in state and local government programs and services. Modeled after the Civil Rights Act of 1964 (which prohibits discrimination on the basis of race, color, religion, sex, or national origin) and Section 504 of the Rehabilitation Act of 1973, the ADA is an “equal opportunity” law for people with disabilities.
Co-Pay Relief Program
http://www.copays.org
The Patient Advocate Foundation’s (PAF) Co-Pay Relief Program (CPR) provides direct financial support to insured patients (including Medicare Part D beneficiaries) who are financially and medically qualified for pharmaceutical treatments and prescription medication co-payments, coinsurance, and deductibles relative to their diagnosis.
Disability.Gov
https://www.disability.gov
The site offers helpful resources on topics such as how to apply for disability benefits, find a job, get health care, or pay for accessible housing.
Patient Advocate Foundation
http://www.patientadvocate.org
Patient Advocate Foundation provides patients with arbitration, mediation, and negotiation support to settle issues with access to care, medical debt, and job retention related to their illness.
U.S. Department of Education
http://www2.ed.gov
Within the U.S. Department of Education, the Office for Civil Right’s (OCR) mission is to ensure equal access to education through the enforcement of civil rights in schools. An important responsibility of the OCR is specifically to eliminate discrimination against students with disabilities.
U.S. Department of Health and Human Services: Mental Health
http://www.mentalhealth.gov
MentalHealth.gov aims to educate the general public, health and emergency preparedness professionals, policy makers, government and business leaders, school systems, and local communities about mental health.
United States Office of Social Security
http://www.ssa.gov/disabilityssi/
The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that help people with disabilities. While these two programs are different in many ways, both are administered by the Social Security Administration and only individuals who have a disability and meet medical criteria may qualify for benefits under either program.
For Caregivers
Caregiver Action Network (CAN)
http://www.caregiveraction.org
The Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for more than 65 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge. CAN serves a broad spectrum of family caregivers, ranging from the parents of children with special needs to the families and friends of wounded soldiers, from a young couple dealing with a diagnosis of MS to adult children caring for parents with Alzheimer’s disease.
Today’s Caregiver Magazine
http://www.caregiver.com
Caregiver Media Group is a leading provider
of information, support and guidance for family and professional caregivers. Founded in 1995, they produce Today’s Caregiver magazine, the first national magazine dedicated to caregivers and the Fearless Caregiver Conferences. Their website includes topic-specific newsletters, online discussion lists, back issue articles of Today’s Caregiver magazine, chat rooms, and an online store. Caregiver Media Group and all of its products are developed for caregivers, about caregivers, and by caregivers.
Family Caregiver Alliance
https://www.caregiver.org
The Family Caregiver Alliance was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care for loved ones at home. They illuminate the caregivers’ daily challenges to better the lives of caregivers nationally, provide them the assistance they need and deserve, and champion their cause through education, services, research, and advocacy.
National Alliance for Caregiving
http://www.caregiving.org
Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the National Alliance for Caregiving’s mission is to be an objective national resource on family caregiving with the goal of improving the quality of life for families and care recipients.
Pharmaceutical Companies
Abbot Laboratories
http://www.abbott.com
Alexion
http://alxn.com
Amicus
http://www.amicusrx.com
AstraZeneca
http://www.astrazeneca.com
Bayer
http://www.bayer.com
BioMarin
http://www.biomarin.com
Brystol-Myers Squib
http://www.bms.com
Centric Health Resources
http://www.centrichealthresources.com
Genzyme
http://www.genzyme.com
GlaxoSmithKline
http://www.gsk.com
Johnson & Johnson
https://www.jnj.com
Merck & Co
http://www.merck.com
Novartis
https://www.novartis.com
Pfizer
http://www.pfizer.com
Roche
http://www.roche.com
Sanofi
http://www.sanofi.us
Shire
http://www.shire.com
Sigma-Tau
http://www.sigmatau.com
Vertex
http://www.vrtx.com
Rare Disease Foundations
5p- Syndrome, Cat Cry Syndrome, Cri du Chat Syndrome
http://www.fivepminus.org
1p36 Deletion Syndrome
http://www.1p36dsa.org
22Q Deletion Syndrome
http://www.amp22q.org
22q11.2 Deletion Syndrome
http://www.22q11ireland.org
Aceruloplasminemia, Neurodegeneration with Brain Iron Accumulation Disorders, Hallervorden-Spatz Syndrome
http://www.nbiadisorders.org
Acid Maltase Deficiency, Pompe’s Disease
http://www.amda-pompe.org
Acromegaly and Gigantism
http://www.acromegalycommunity.com
ADCY5 Mutation
http://www.adcy5.org
ADNP Syndrome, Helsmoortal Van Der AA Syndrome
http://www.adnpkids.com
Adrenal Insufficiency
http://www.aiunited.org
Adrenoleukodystrophy
http://www.aldconnect.org
http://www.aidanjackseegerfoundation.org
Adult Polyglucosan Body Disease
http://www.apbdrf.org
Alagille Syndrome
http://www.alagille.org
Alkaptonuria
http://www.akusociety.org
http://www.akusocietyna.org
Alpha-1 Antitrypsin Deficiency
http://www.alphaone.org
Alport Syndrome
http://www.alportsyndrome.org
Alström Syndrome
http://www.alstromangels.com
Alternating Hemiplegia of Childhood
http://www.ahckids.org
http://www.ahcfe.eu
Amyloidosis
http://www.amyloidosisresearchfoundation.org
http://www.arci.org
Amyloidosis Alect2
http://www.lect2.org
Aplastic Anemia, Myelodysplastic Syndromes, Paroxysmal Nocturnal Hemoglobinuria
http://www.aamds.org
APS Type 1 (APECED)
http://apstype1.org
Arachnoiditis
http://www.facebook.com/ArachnoiditisSocietyforAwarenessandPrevention
Arterial Tortuosity Syndrome
http://www.atwistoffate-ats.com
Ataxia-Telangiectasia
http://atcp.org
Atypical Hemolytic Uremic Syndrome
http://www.atypicalhus.net
Autoimmune Hepatitis
http://www.aihep.org
Bardet-Biedl Syndrome
http://www.bardetbiedl.org
Barth Syndrome
http://barthsyndrome.org
Batten Disease
http://www.beyondbatten.org
Behcet’s Disease
http://www.behcets.com
Bohring-Opitz Syndrome
http://www.bos-foundation.org
Castleman Disease
http://www.castlemannetwork.org
Cavernous Angioma
http://www.angiomaalliance.org
Cerebral Autosomal Dominant Arteriopathy Subcortical Infarcts Leukoencephalopathy
http://cadasilassociation.org
Congenital Adrenal Hyperplasia
http://caresfoundation.org
Congenital Disorders of Glycosylation (CDG)
http://www.alphaepsilonomega.org/foundation/amour
Creatine Transport Deficiency, Guanidinoacetate Methyltransferase Deficiency, L-Arginine: Glycine Amidinotransferase
http://creatineinfo.org
Crohn’s Disease, Ulcerative Colitis
http://www.crohnscolitisfoundation.org
Cryoglobulinemia
http://www.allianceforcryo.org
Cryopyrin-Associated Periodic Syndromes, Neonatal-Onset Multisystem Inflammatory Disease, Chronic Infantile Neurological Cutaneous and Articular Syndrome, Familial Cold Auto Inflammatory Syndrome
http://www.autoinflammatory.org
Cushing’s Syndrome
http://www.csrf.net/
Cystic Fibrosis
http://www.cfri.org
Duchenne Muscular Dystrophy
http://www.coalitionduchenne.org
Duchenne Muscular Dystrophy, Becker Muscular Dystrophy
http://www.parentprojectmd.org
Dystonia
http://dystonia-foundation.org
Ehlers-Danlos Syndrome
http://www.edsers.com
http://www.ehlersdanlosnetwork.org
Eosinophilic Disorders
http://apfed.org
Epilepsy
http://www.epilepsywarriors.org
Fabry Disease
http://www.fabry.org
Familial Adenomatous Polyposis
http://www.hcctakesguts.org
Familia Exudative Vitreopothy (FEVR)
https://www.facebook.com/cailees.corner
Fibrodysplasia Ossificans Progressiva, Myositis Ossificans Progressiva
http://www.ifopa.org
Fibromuscular Dysplasia
http://www.fmdsa.org
Friedreichs Ataxia
http://www.curefa.org
Gaucher Disease
http://www.gaucherdisease.org
Glycogen Storage Disease
http://www.agsdus.org
Guillain-Barré Syndrome, Chronic Inflammatory Demyelinating Polyneuropathy
http://www.gbs-cidp.org
Hospital-Acquired Necrotizing F
asciitis
http://www.patientsafetyasap.org
Huntington’s Disease
http://www.hdsa.org
Idiopathic Intracranial Hypertension
http://www.ihaveiih.com
Interstitial Lung Disease
http://www.child-foundation.com
Jacobsen Syndrome, 11q Chromosome
http://www.11qusa.org/home
Kabuki Syndrome
http://www.allthingskabuki.org
Klippel-Feil Syndrome
http://kfsalliance.org
Leukodystrophies
http://www.thecalliopejoyfoundation.org
Leukodystrophy
http://www.missionmassimo.com
Lynch Syndrome
http://lynchcancers.com
Lysosomal Diseases, India
http://www.lysosomaldiseasenetwork.org
Marfan Syndrome
http://www.marfan.org
Mayer-Rokitansky-Küster-Hauser Syndrome
http://www.beautifulyoumrkh.org
Metabolic Disorders
http://www.themetabolicfoundation.com
Multiple Endocrine Neoplasi
http://amensupport.org
Multiple Pediatric Rare Diseases
http://www.littlemisshannah.org
Multiple Rare Diseases
http://awareofangels.org
http://chivecharities.org
http://www.everylifefoundation.org
http://rarediseaseunited.org
http://sanfordresearch.org/cords
Multiple Rare Diseases, Undiagnosed
http://rareundiagnosed.org
Narcolepsy
http://www.narcolepsynetwork.org
http://www.wakeupnarcolepsy.org
Nemaline Myopathy
http://www.buildingstrength.org
Neurosarcoidosis, Sarcoidosis
http://www.sarcoidosisofli.com
Niemann Pick Disease
http://www.nnpdf.org
Niemann Pick Type C
http://addiandcassi.com
Ohtahara Syndrome
http://www.ohtahara.org
One or More Extra X and/or Y Chromosomes
http://www.genetic.org
Surviving and Thriving With an Invisible Chronic Illness_How to Stay Sane and Live One Step Ahead of Your Symptoms Page 16
