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Vitiligo is a chronic autoimmune disorder that causes patches of skin to lose pigment or color. The cause of vitiligo is unknown, but it may be related to immune system changes, genetic factors, stress, or sun exposure. Treatment options include topical medications, light therapy, surgery and cosmetics.
Sanfilippo syndrome, also known as mucopolysaccharidosis type III (MPS III), is a rare autosomal recessive lysosomal storage disease that primarily affects the brain and spinal cord. It is caused by a buildup of large sugar molecules called glycosaminoglycans (AKA GAGs, or mucopolysaccharides) in the body's lysosomes.
The British Heart Foundation (BHF) is a cardiovascular research charity in the United Kingdom. It funds medical research related to heart and circulatory diseases and their risk factors, and runs influencing work aimed at shaping public policy and raising awareness.
PUVA is an ultraviolet light therapy treatment for skin diseases: vitiligo, eczema, psoriasis, graft-versus-host disease, mycosis fungoides, large plaque parapsoriasis, and cutaneous T-cell lymphoma, using the sensitizing effects of the drug psoralen. The psoralen is applied or taken orally to sensitize the skin, then the skin is exposed to UVA.
Neglected tropical diseases (NTDs) are a diverse group of tropical infections that are common in low-income populations in developing regions of Africa, Asia, and the Americas. They are caused by a variety of pathogens, such as viruses, bacteria, protozoa, and parasitic worms (helminths). These diseases are contrasted with the "big three" infectious diseases, which generally receive greater treatment and research funding. In sub-Saharan Africa, the effect of neglected tropical diseases as a group is comparable to that of malaria and tuberculosis. NTD co-infection can also make HIV/AIDS and tuberculosis more deadly.
The National Psoriasis Foundation (NPF) is the world's largest nonprofit organization serving people with psoriasis and psoriatic arthritis. The NPF provides information and services to help people manage their condition while supporting research to find a cure. In addition to serving more than 3 million people annually through patient and professional health education and advocacy initiatives, the NPF has funded more than $10 million in psoriatic disease research grants and fellowships.
Colorectal Cancer Alliance is the largest and oldest colorectal cancer non-profit organization in the US.
Genodermatosis is a hereditary skin disease with three inherited modes including single gene inheritance, multiple gene inheritance and chromosome inheritance. There are many different types of genodermatosis, the prevalence of genodermatosis ranges from 1 per 6000 people to 1 per 500,000 people. Genodermatosis has influence on the texture, color and structure of skin cuticle and connective tissue, specific lesion site and clinical manifestations on the body vary depending on the type. In the spite of the variety and complexity of genodermatosis, there are still some common methods that can help people diagnose. After diagnosis, different types of genodermatosis require different levels of therapy including interventions, nursing interventions and treatments. Among that, research of therapy for some new, complex and rare types are still in the developing stage. The impact of genodermatosis not only can be seen in body but also can be seen in all aspects of patients' life, including but not limited to psychological, family life, economic conditions and social activities. Accordingly, the patients need treatment, support and help in these areas.
World Lymphoma Awareness Day (WLAD) is held on September 15 every year and is a day dedicated to raising awareness of lymphoma, an increasingly common form of cancer. It is a global initiative hosted by the Lymphoma Coalition (LC), a non-profit network organisation of 83 lymphoma patient groups from 52 countries around the world. WLAD was initiated in 2004 to raise public awareness of both Hodgkin and non-Hodgkin lymphoma in terms of symptom recognition, early diagnosis and treatment.
Global Hand washing Day (GHD) is an international hand washing promotion campaign to motivate and mobilize people around the world to improve their hand washing habits. Washing hands at critical points both during the day and washing with soap are important. In 2008, Global Handwashing Day was celebrated for the first time. This day aims to make people around the world aware of the importance of washing their hands with soap in order to prevent diseases and infections. To commemorate this special day, over 120 million children in 70 countries were encouraged to practice handwashing with soap. Since then, the movement has built momentum, garnering support from various stakeholders such as governments, schools, NGOs, and private firms.
Purple Day is a global grassroots event that was formed with the intention to increase worldwide awareness of epilepsy, and to dispel common myths and fears of this neurological disorder. Further intentions of this movement are to reduce the social stigmas commonly endured by many individuals afflicted with the condition, to provide assurance and advocacy to those living with epilepsy, and to encourage individuals living with the condition to take action in their communities to achieve these aims. The day occurs annually on March 26.
Jose Chacko Periappuram is an Indian cardiac surgeon and medical writer who performed the first successful heart transplant in the state of Kerala, India, as well as the first successful heart retransplant in the country. His other achievements include the first beating heart, awake bypass and total arterial revascularization surgeries in the state. Periappuram is a fellow of the Royal College of Surgeons of Edinburgh, the Royal College of Surgeons of Glasgow and the Royal College of Surgeons of London. He is the founder and chairman of "Heart Care Foundation", a charitable trust that financially assists poor heart patients. The Government of India awarded him the Padma Shri, the fourth highest civilian award, in 2011.
World Stroke Day is observed on October 29 to underscore the serious nature and high rates of stroke, raise awareness of the prevention and treatment of the condition, and ensure better care and support for survivors. On this day, organizations around the world have facilitated events emphasizing education, testing, and initiatives to improve the damaging effects of stroke worldwide. The annual event was started in 2006 by the World Stroke Organization (WSO) and the WSO declared stroke a public health emergency in 2010. The WSO now has an ongoing campaign that serves as a year-round interface for advocacy, policy, and outreach to support strides and continue progress made on World Stroke Day.
The International Osteoporosis Foundation (IOF), headquartered in Nyon, Switzerland, is a non-governmental organization (NGO) founded in 1998. It was formed from the merger of the European Foundation for Osteoporosis, founded in 1987, and the International Federation of Societies on Skeletal Diseases. The foundation functions as a global alliance of individuals and organizations concerned with the prevention, diagnosis and treatment of osteoporosis and musculoskeletal bone disease. The goal of the Foundation is to increase the early detection of osteoporosis and related musculoskeletal diseases, as well as to improve the treatment of these conditions through international collaboration among national healthcare systems and governments. The Foundation is the largest global NGO dedicated to osteoporosis and musculoskeletal diseases.
The Vitiligo Research Foundation (VRF) is a 501(c)(3) non-profit organization focused on the human skin disease, vitiligo.
Adeyinka Gladys Falusi, FAS NPOM, is a Nigerian Professor of haematology and former Director of the Institute for Advanced Medical Research and Training, College of Medicine, University of Ibadan.
PharmAccess Foundation is a part of the PharmAccess Group. PharmAccess is an international non-profit organization with a digital agenda dedicated to connecting more people in sub-Saharan Africa to better healthcare. By making use of public-private partnerships, they leverage donor contributions, which they believe will pave the way for private investments hereby contributing to healthier populations and social and economic development. Currently PharmAccess employs a multidisciplinary team of professionals in Tanzania, Kenya, Nigeria, Ghana and the Netherlands.
Project Pink Blue, registered as Health & Psychological Trust Centre is a cancer nonprofit engaged in raising cancer awareness, patient navigation, advocacy and free breast and cervical cancer screening for women living in poverty. The organization launched Nigeria's first patient navigation in 2015 and a toll- free telephone centre 08000CANCER in 2016 Project PINK BLUE won the SPARC Metastatic Breast Cancer challenge grant by Union for International Cancer Control and Pfizer Oncology in Lisbon, Portugal.
The Parkinson's Foundation is a national organization that funds research and provides educational resources to Parkinson’s disease patients and caregivers. The Parkinson's Foundation was established in 2016 through the merger of the National Parkinson Foundation and the Parkinson's Disease Foundation. The Parkinson's Foundation has headquarters in Miami and New York City, in addition to 17 chapters throughout the United States.
References
- ↑ http://www.facebook.com/notes/ogo-maduewesi/report-vitiligo-purple-fun-day-vitiligo-awareness-day-25th-june-2011/2011494841660 [ user-generated source ]
- ↑ "Support Vitiligo Awareness Day". Archived from the original on 2011-08-16.
- ↑ Gopal, B. Madhu (25 June 2020). "'Time to dispel fears over vitiligo'". The Hindu.
- ↑ "Home". vrfoundation.org.