Resources

These organizations, websites, and networks are groups that can help chronically ill children, and teens, and adults.

Advocacy Organizations:

The American Partnership for Eosinophilic Disorders (APFED) is a 501c3 nonprofit organization founded in December 2001 by a group of mothers of young children living with eosinophil-associated diseases. We are a patient advocacy group dedicated to improving the lives of those living with eosinophilic disorders.

The Coalition Against Pediatric Pain is a national non-profit committed to improving the quality of life of children living with chronic pain from rare diseases by: supporting and uniting families affected by pediatric pain, advocating for children in pain by increasing awareness of their needs, educating others regarding their long-term consequences of pediatric pain, funding research dedicated to pediatric pain conditions and providing resources to families and professionals.

The Crohn’s & Colitis Foundation of America (CCFA) is a non-profit, volunteer-driven organization dedicated to finding the cures for Crohn’s Disease and ulcerative colitis, and to improving the quality of life of children and adults affected by these diseases.

Cyclic Vomiting Syndrome Association includes information and support for those dealing with the disorder.

Dysautonomia International is a non-profit founded in 2012 by patients, caregivers, physicians and researchers dedicated to assisting people living with various forms of dysautonomia.

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy.

Rare Giving (part of the EveryLife Foundation for Rare Diseases) is the Foundation’s grant program to support individual rare disease patients and patient organizations. It offers grants for travel to Rare Disease Advocacy events, as well as event sponsorship of patient and physician education events that facilitate collaboration across diseases and/or engage rare disease advocates in public policy.

Food Allergy Research & Education (FARE) works on behalf of the 15 million Americans with food allergies, including all those at risk for life-threatening anaphylaxis.

Feeding Tube Awareness Foundation was founded in 2010 to support parents of children who are tube-fed, while raising positive awareness of tube feeding as a lifesaving medical intervention. They have information, a network, and support for parents of children who are tube fed, and people who tube feed themselves.

Global Genes is a leading rare disease advocacy organization with global reach to the worldwide rare community of patients, caregivers, advocates and clinical partners, with a  mission to eliminate the challenges of rare disease.

G-Pact is non-profit organization which provides services to patients who have a digestive tract paralysis including gastroparesis, chronic intestinal pseudo-obstruction, and colonic inertia.

 

Gastroparesis and Dysmotilities Association has been established in order to try to find solutions through supporting research, increasing public awareness, and providing information to those who suffer with gastroparesis and related gastrointestinal dysmotilities.

National Organization for Rare Disorders (NORD) provides a unified voice for those courageous individuals, and the parents and other caregivers seeking to help them, so that they won’t have to fight that battle alone.

 

The Oley Foundation  is an organization dedicated

The US Pain Foundation is a non profit dedicated to serving those who live in pain and their care providers.

The United Mitochondrial Disease Foundation dedicated to promoting research and education for the diagnosis, treatment, and cure of mitochondrial disorders
and providing support to affected individuals and families.

Wish Granting Organizations

The Dream Factory grants dreams to children diagnosed with critical or chronic illnesses who are 3 through 18 years of age.

The Granted Wish Foundation: It’s purpose is “To provide wish fulfillment to disabled, disadvantaged and deserving individuals and families.” The foundation is not just for young or terminally ill; it is for anyone who deserves a wish!

Special Spaces creates dream bedrooms for children with life-threatening medical illnesses. This is a place that only the child can dream or imagine while addressing their medical needs. Our focus is answering one question;Where does a child go when battling a serious illness to find peace and comfort.

The Dream Foundation serves terminally ill adults and their families by providing end-of-life dreams that offer inspiration, comfort, and closure.

Wish Upon a Wedding is a 501(c)(3) nonprofit organization granting weddings and vow
renewals for couples facing serious illness or a life-altering circumstance.

Medical Flights

Miracle Flights For Kids provides financial assistance for medical flights so that seriously ill children may receive life-altering, life-saving medical care and second opinions from experts and specialists throughout the United States.

Angel Flights is a non-profit charitable organization of pilots, volunteers, and friends. They will arrange free air transportation for any legitimate, charitable, medically related need. This service is available to individuals, and health care organizations.

Corporate Angel Network arranges free air transportation for cancer patients traveling to treatment using the empty seats on corporate jets.

The Volunteer Pilots Program (VPA) provides flights to people in need who must travel to receive necessary medical treatment.

Organizations with uplifting services:

The Ashley Wade Foundation: The mission of The Ashley Wade Foundation is to enrich the lives of children suffering from chronic illnesses. The Ashley Wade Foundation makes and delivers care packages to children in hospitals or at their homes. Aside from delivering care packages, The Ashley Wade Foundation also holds family fun days for the families in our Superstar Program, and holds hospital parties at various hospitals throughout the year.

Aware of Angels advocates for children who have genetic, rare or undiagnosed disorders. An accurate and conclusive diagnosis for these children will not only give direction for proper treatments and improve their quality of life, but in some cases it may save their life. By sharing their stories and images, we are advocates for families to the medical and research fields, as well as connect families in similar situations.

Beads of Courage is a fantastic organization that provides beads for every medical procedure. Helping kids fighting serious illnesses record, tell, and own their stories.

Binkeez for Comfort provides handmade blankets to kids fighting serious and chronic illnesses, or who are in the hospital.

Blanket Hugs provides handmade blankets to kids fighting life-threatening illnesses.

Flashes of Hope  is a non-profit organization dedicated to creating powerful, uplifting portraits of children fighting cancer and other life-threatening illnesses.

The Green Feathers Project is a project started by a chronically ill teen, where a bracelet with a green feather can be sent to help chronic illness fighters have hope.

Made By Mer: a chronically ill teen builds websites for donations to a few of her favorite charities.

The Molly Project uses photography to celebrate the lives of the incredible families we meet. Families facing enormous challenges, resolute, and impossibly strong. And above all, deeply loved.

The Parker Lee Project is a 501c3 nonprofit organization dedicated to helping the families of children with medical needs obtain the supplies/equipment, education, and support they need.

The Superhero Project: providing superpowers to those in need. Sends handmade bracelets to those fighting big battles.

The Sick Chick Network: When living in the world of the chronically ill we often meet other medically challenged friends who we establish an instant bond with as they truly understand the daily challenges of what you live with. And while we may meet these friends briefly through on line support groups, at a medical conference or at a doctor appointment, it is so important to hold on to them, to nurture the friendship and to support each other in whatever that support may look like. The Sick Chick network was created to unify and strengthen our friends who have truly become sisters.

 

 

 

 

 

 

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