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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.

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  • 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.

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  • 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.

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  • 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.

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  • 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.

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  • 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.

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  • 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.

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  • 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.

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  • 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.

     

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  • 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.

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  • 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!

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