The Immune Deficiency Foundation (IDF) is a US-base organization that helps patients having primary immunodeficiencies (PI). Recently it has made an announcement about a new website launch which is particularly designed for parents of young patients suffering from severe combined immunodeficiency (SCID). This is a chronic medical condition that is genetic and may be fatal if not diagnosed within the first 12 months of a baby’s life.
This site is called www.scidcompass.org and it is open to access for the public. The parents of SCID diagnosed infants can access comprehensive information on the disease and the possible treatment options for their kid. These medical devices also include the basic care guide of a SCID diagnosed baby and a link to access to other parents having SCID patient infants for emotional support.
This website is a subsidiary of a big project on SCID patient care. This project is called SCID Compass Program and it has received two-year-long funding from the U.S. Health Resources and Services Administration department (HRSA). This project aims to help SCID diagnosed infants and their families in a way that;
- It spreads awareness of the disease itself.
- It connects families that have a SCID patient infant.
- It helps deserving families to access healthcare and treatment options.
- It is developing easy to approach strategies for infancy screening.
Immune Deficiency Foundation (IDF) started working more than three decades ago and since then, it is working to improve the quality of life for primary immunodeficiency patients. It focuses on strong community-based empowerment in the fields of education, awareness, research, and services for deserving patients.
Primary immunodeficiency disease (PI) is common in the U.S and currently, there are more than 250,000 cases of PI in the USA. Being a rare condition, it is difficult for patients to access and receive specialized healthcare that they require to combat this disease. Often times the diagnoses are late which further reduces the chances of survival in such cases.
SCID is a rare genetic condition where a baby is born with compromised immunity. These patients lack T cells in their body which are a typical precursor of immunity. Due to low T cells, they are not able to initiate an immune response when needed. That is why a baby born with SCID is at high risk of any infection, bacterial, fungal or viral.
The only treatment for SCID is the bone marrow transplant or the newly developed gene therapy provided within a few months of diagnosis. Each year, there are 76 cases of SCID cases only in the USA and its incidence is high in other parts of the world as well.
Immune Deficiency Foundation (IDF) helps all such patients and work on these problems so that the patients and their families are not left alone. For launching this new website, IDF has collaborated with SCID diagnosed patient’s parents and added them into support groups. It has also partnered with top healthcare professionals with years of professional experience in SCID cases.
Further partners in this project include the following.
- Association of Public Health Laboratories, a diagnostic lab for providing infant screening tests
- Genetic Alliance, an organization working on health advocacy
- RTI International, a research agency to develop new treatments
Together all these organizations have helped to build this new website and they will shortly employ the best physicians and clinicians of the respective field.
The new website is a much-needed help for SCID affected children’s parents. It would educate them on this rare disease that may turn into a life-threatening disorder within no time. Also, it would help them emotionally through connecting with other people who are going through the same phase.