Malan syndrome, first diagnosed in 2010, is a rare genetic disorder characterized by macrocephaly, cognitive impairment, epilepsy, vision/hearing impairment, heart abnormalities, and scoliosis. Individuals with Malan syndrome have a change in the NFIX gene. Approximately 350 individuals, mainly children, have been diagnosed with Malan syndrome worldwide. There is limited understanding of the syndrome and how it progresses. Currently, no disease-modifying treatments exist.
The mission of the Malan Syndrome Foundation is to improve the lives of those affected by Malan syndrome in the global community through support, outreach and research. We aim to:
(1) Provide a broad network of support to families affected by Malan syndrome and help advance access to a diagnosis; (2) Promote knowledge development, awareness and sharing of information; and (3) Explore research pathways to treatments and cures, as well as enhance understanding of Malan syndrome and related disorders.
Please consider donating to the Malan Syndrome Foundation. More than 95% of all donations go directly to support research, outreach and family educational conferences.
Company Details
- Employees
- 5
- Founded
- -
- Address
- Greater New York City, New Jersey 08875, Us
- Industry
- Philanthropic Fundraising Services
- NAICS
-
Grantmaking and Giving ServicesGrantmaking FoundationsVoluntary Health OrganizationsOther Grantmaking and Giving Services
- Website
- malansyndrome.org
- Keywords
- Greater New York City.
- HQ
- Greater New York City, New Jersey
- Competitors
- Maternal Alloimmunization Foundation, American Society of Gene & Cell Therapy, Children's Hospital of Philadelphia, LIGUE FRANCOPHONE BELGE CONTRE L'EPILEPSIE, Foundation to Fight H-abc, United Leukodystrophy Foundation, KBG Foundation, Rosenau Family Research Foundation, Tatton Brown Rahman Syndrome (TBRS) Community Inc., Smith-Kingsmore Syndrome Foundation.
Malan Syndrome Foundation Questions
Malan Syndrome Foundation's website is malansyndrome.org
Malan Syndrome Foundation's LinkedIn profile is https://www.linkedin.com/company/malansyndromefoundation
Malan Syndrome Foundation has
5 employees.
View email and phone details for 5
employees at Malan Syndrome Foundation.
Malan Syndrome Foundation's industry is
Philanthropic Fundraising Services
Malan Syndrome Foundation's top competitors are
Maternal Alloimmunization Foundation,
American Society Of Gene & Cell Therapy,
Children's Hospital Of Philadelphia,
Ligue Francophone Belge Contre L'epilepsie,
Foundation To Fight H-Abc,
United Leukodystrophy Foundation,
Kbg Foundation,
Rosenau Family Research Foundation,
Tatton Brown Rahman Syndrome (Tbrs) Community Inc.,
Smith-Kingsmore Syndrome Foundation.
Malan Syndrome Foundation's categories are Philanthropic Fundraising Services
Malan Syndrome Foundation's founding year is 2018
