Rare Disease

Community, Stories & Info

Rare Disease > Partners Associated with Rare Disease

Our Rare Disease Partners

  • A2A Alliance

    We are dedicated to inspiring, educating, and facilitating the process of turning personal challenges into service to others with similar challenges.

    more >
  • Abby Grace Foundation

    The Abby Grace Foundation is a non-profit organization created to improve the lives of children diagnosed with the rare, genetic, terminal disorder know as Sanfilippo Syndrome.

    more >
  • Art Feeds

    Art Feeds exists to feed creative development and facilitate emotional expression in children through art and community. We strive to live by the lessons our students teach us, to: Love Naively. Give Generously. Be Foolishly Compassionate.

    more >
  • ATwistofFateATS

    A Twist of Fate-ATS is the international nonprofit/patient group for arterial tortuosity syndrome. Supporting patients, families and specialists in finding the “cure” for ATS

    more >
  • BohringOpitzFoundationInc

    The Bohring-Opitz Syndrome Foundation, Inc. is a non-profit organization dedicated to improving the lives of people affected by BOS through the establishment of a medical advisory board, awareness initiatives, and patient/parent advocacy.

    more >
  • Castleman Disease Collaborative Network

    The Castleman Disease Collaborative Network (CDCN) is a global initiative dedicated to accelerating research and treatment for Castleman disease (CD) to improve survival for all patients with CD.

    more >
  • Chromosome Disorder Outreach

    Chromosome Disorder Outreach Inc. is a non-profit organization which was founded in 1992 by a group of seven parents raising children born with rare chromosome disorders.

    more >
  • CMTC-OVM

    Our global non-profit patientorganization was formally established on January 22, 1997, to promote the welfare of people who suffer from vascular malformations such CMTC (Van Lohuizen syndrome), particularly its own members, and to promote and develop activities that foster well being.

    more >
  • Cure Sanfilippo Foundation

    Cure Sanfilippo Foundation is a 501c3 nonprofit whose mission is to advocate for and fund research directed towards a cure or treatment options for children with Sanfilippo Syndrome.

    more >
  • Do It For The Love

    Do It For The Love is a nonprofit wish-granting organization co-founded by Michael Franti and Sara Agah Franti, that brings people living with life-threatening illnesses, children with severe challenges, and wounded veterans to live concerts.

    more >
  • EM Warriors: Erythromelalgia Patient Support & Information Network

    EM Warriors is an international patient support & information network dedicated to empowering, educating and encouraging all those living with or affected by erythromelalgia and its comorbidities.

    more >
  • EURORDIS Logo

    EURORDIS

    EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 716 rare disease patient organisations in 63 countries.
    We are the voice of 30 million people affected by rare diseases throughout Europe.

    more >
  • Global Genes

    Global Genes is a leading patient advocacy 501c3 working to eliminate the challenges of rare disease faced by over 350 million people worldwide.

    more >
  • Harmony 4 Hope

    Through the universal power of music, the mission of Harmony 4 Hope is to uplift children, mobilize community and contribute to external scientific discoveries in Rare Disease.

    more >
  • Hereditary Neuropathy Foundation

    The Hereditary Neuropathy Foundation’s mission is to increase awareness and accurate diagnosis of Charcot-Marie-Tooth (CMT) and related inherited neuropathies, support patients and families with critical information to improve quality of life, and fund research that will lead to treatments and cures.

    more >
  • Klippel-Feil Syndrome Freedom

    Klippel-Feil Syndrome Freedom empowers and unites patients and their families through peer support, education, research, and advocacy, for a lifetime of improved health care.

     

    more >
  • Luka the Lion Foundation

    Luka The Lion Foundation raises awareness for pediatric rare diseases and supports patients and their families so nobody ever feels alone.

    more >
  • National Organization for Rare Disorders

    Every day in America, 30 million people wake up to fight the battle with a rare disease.

     

    more >
  • Patient Services, Incorporated.

    We are a national non-profit that helps chronically ill patients with unaffordable medical expenses.

    more >
  • Phelan McDermid Syndrome Foundation

    Our vision is to advocate for families worldwide affected by Phelan-McDermid Syndrome and accelerate the search for a cure. Our mission is to offer family support, facilitate research, advocate, and raise awareness of PMS.

    more >
  • Prader-Willi California Foundation

    Prader-Willi syndrome is a rare genetic disorder. It causes many symptoms including its hallmark symptoms: an insatiable appetite no matter how much food is eaten, and behavior problems similar to but often more severe than Autism. With early diagnosis, appropriate medical and therapeutic interventions, and continuous support, the prognosis for children with PWS is improving. Prader-Willi California Foundation provides individuals with PWS, their families, and the professionals who serve them with education, support, research opportunities, and advocacy services. The diagnosis of Prader-Willi syndrome can be devastating, but PWCF is dedicated to improving the quality of life of all who are impacted by PWS. Our vision is that persons with PWS will live full lives without limits. Help us make the miracles our children need.

    more >
  • Saving Lives One Flight At A Time

    Miracle Flights is a nonprofit organization and the nation’s leading health and welfare flight organization. We provide flight assistance through commercial airlines to children and families who need to reach distant, specialized medical care from experts and specialists throughout the United States. Through the support of our Miracle Makers, families are given hope that their loved ones may live longer, healthier lives.

    more >
  • SignUp

    At SignUp, we believe that people should be rewarded for stepping forward and sharing their time and talents with those in need.

    more >
  • The Caregiver Space

    Not everyone has friends who understand or will even listen; that’s why we’re here. We provide a safe and open space—at no cost to you— where you can be real about what it’s like to care for someone dealing with a serious disability or illness.

    You can use our community forums to ask questions, share experiences, get real answers, or just get things off your chest. Please do not use this space as a substitute for professional advice from your lawyer or doctor.

    No matter what stage you are in your caregiver journey—whether you currently care for someone, are about to, or did it in the past—you’re welcome here. This website is always accessible, so you can look forward to finding comfort and relief at any hour of the day or night.

    This is your safe space, The Caregiver Space.

    more >
  • VHL Alliance

    Von Hippel-Lindau (VHL) is a genetic condition involving abnormal growth of blood vessels in up to 10 parts of the body.

    more >
  • We Are Special Inc

    We are S.P.E.C.I.A.L. Inc. (Supporting Parents Experiencing Challenges In Assisting Loved-ones) is a non-profit organization whose mission is to provide support to parents of special needs children through non-traditional services that will approve the quality of life and work life balance for parents.

    We Are Special Inc, was founded by Lesley Sedgwick, the mom of an amazing little guy named Kevin who was born with a rare neuromuscular ​condition called Moebius Syndrome which causes developmental delays and poor muscle tone. Like most parents who are surprised by a congenital condition diagnosis, I felt lost and didn’t quite know where to begin to help my son thrive in life. Also like most parents I vowed to ensure that my son would have and receive the best care possible. Through the more appointments that I attended and the more parents that I met like myself I saw that there was a need for “special” parents like us that just wasn’t being met. That’s when I decided to found We Are Special Inc. to provide non-traditional services to special needs parents to assist in lightening the load of parenting special needs children one service at a time!

    more >

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.