Rare Disease Report partners with 31 organizations
Friday, June 23, 2017
Rare Disease Report, the digital component of Rare Disease Communications, has added 31 organizations as part of the Strategic Alliance Partnership Program. Through this program, these medical institutes and advocacy groups will offer information on the latest advancements in clinical research and advocacy.
“We are honored to partner with some of the most prominent organizations as a part of our Strategic Alliance Partnership Program. These collaborations will allow us to spread awareness and help expedite scientific developments for various rare diseases,” said Michael J. Hennessy Jr., president of Michael J. Hennessy Associates, parent company of Rare Disease Communications.
The partners are:
- NORD’S Voice of the Community is the primary nonprofit organization that provides support for patients and families affected by rare diseases.
- Batten Disease Support and Research Association is dedicated to funding research for treatments and cures, family support and advancing awareness.
- Tuberous Sclerosis Alliance is dedicated to patient-focused drug development to cure tuberous sclerosis complex.
- Fibromuscular Dysplasia Society of America is a public health charity dedicated to better the diagnosis and treatment of fibromuscular dysplasia.
- Hereditary Neuropathy Foundation is a foundation dedicated to therapeutic research in its accelerated discovery program, which develops treatments for Charcot-Marie-Tooth disease.
- Disorder: The Rare Disease Film Festival is an event that focuses on movies about the challenges of living with rare diseases.
- Morgan Leary Vaughan’s Fund (Morgan’s Fund), an all-volunteer organization dedicating to promoting and spreading awareness about necrotizing enterocolitis.
- Courageous Parents Network is a support system created by families, for families with children affected by rare disease.
- ThinkGenetic, an organization that is committed to improving lives of individuals affected by genetic diseases.
- JAR of Hope is dedicated to bringing awareness and raise funds to promote research to end Duchenne muscular dystrophy.
- BioPontis Alliance for Rare Diseases, an international nonprofit organization committed to advancing research and treatment for rare neurological diseases.
- Bohring-Opitz Syndrome (BOS) Foundation is an organization dedicated to improving the lives of people affected by BOS through awareness initiatives, advocacy and medical advisory board.
- Worldwide Syringomyelia & Chiari Task Force is dedicated to educating the world about syringomyelia and Chiari malformation.
- VHL Alliance, founded in 1933, VHL Alliance provides resources, education and support to help doctors understand and treat von Hippel-Lindau syndrome.
- Patient Airlift Services (PALS)—PALS offers free air transportation for patients who cannot afford to fly commercially to get to their required medical treatments, follow-ups and diagnosis.
- Cure CMD, is a nonprofit organization dedicated to advancing research for treatments and cure for congenital muscular dystrophies.
- Alternating Hemiplegia of Childhood (AHC) Foundation s helps fund research to find a cure and provide support to children and loved affected by AHC.
- Youreka Science helps scientific finding become more accessible to the public by providing interactive videos about the newest biomedical research findings.
- AltaVoice is dedicated to building and hosting patient insights networks, which collect and share health data to help drug developers, advocacy organizations and researchers improve lives.
- Pediatric Hydrocephalus Foundation raises funds and spreads awareness about hydrocephalus.
- Progeria Research Foundation is a nonprofit organization dedicated to enhancing research for Hutchinson-Gilford progeria syndrome.
- International Pemphigus & Pemphigold Foundation offers resources and education to doctors around the globe with information about pemphigus and pemphigold.
- Congenital Hyperinsulinism International is a charitable foundation committed to improving the lives of children, adults and families suffering with congenital hyperinsulism.
- The Jain Foundation is dedicated to cure muscular dystrophies caused by dysferlin protein deficiency.
- Medikidz provides medical comic books written by doctors for children.
- The Guthy-Jackson Charitable Foundation offers research funding for neuromyelitis optica.
- Bridge the GAP offers education, funding and support to families impacted by SYNGAP mutations.
- National ALS Registry is a congressionally mandated registry for people in the U.S. with amyotrophic lateral sclerosis.
- Fairview Pharmacy is committed to provide education for children to lead longer, healthier lives.
- Fabry Support & Information Group, spreads awareness and provides support to individuals affected by Fabry disease.
- Thomas Jefferson University offers a scientific registry of transplant recipients , which reports organ transplantation outcomes.
The collaboration with 31 partners will help provide exceptional content including latest innovations in clinical research and advocacy news to help medical professionals better serve their patients. Additionally, the content will help keep patients well informed about developments in the rare disease community.