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Providence (RI) LLS Blood Cancer Support Group

Read more about Providence (RI) LLS Blood Cancer Support Group

We are pleased to let patients and families know about the LLS blood cancer support group opportunities around the country. These support groups are facilitated by LLS, not AAMDSIF. This group meets on the first Wednesday of every month from 5:30pm-7:00pm. The group is facilitated by Jim Willsey, Ellie Colins, Susan Garland and Diane Passantino. If you would like to join the support group or want more information, please contact LLS, (401) 943-8888.

Lansing (MI) LLS Virtual Blood Cancer Support Group

Read more about Lansing (MI) LLS Virtual Blood Cancer Support Group

We are pleased to let patients and families know about the LLS blood cancer support group opportunities around the country. These support groups are facilitated by LLS, not AAMDSIF. This group meets on the the second Thursday of the month from 6:00pm - 7:00pm at Breslin Cancer Center 401 W Greenlawn Avenue Lansing, MI 48910. The group is facilitated by Robin Willner. There is no charge to participate in this group but pre-registration is required, https://www.llsform.org/ho0999SER/LAN1FSG/index.html

Little Rock (AR) LLS Virtual Blood Cancer Support Group

Read more about Little Rock (AR) LLS Virtual Blood Cancer Support Group

We are pleased to let patients and families know about the LLS blood cancer support group opportunities around the country. These support groups are facilitated by LLS, not AAMDSIF. This virtual group meets on the first Tuesday of each month from 6:00-8:00 PM. If you have any questions about the group, please contact - Harold Dean at DeanHaroldM@uams.edu or April Dumond, RN, MSN, OCN at radumond@aol.com. Regitration is required to receive the login information to join the group. Use this link to register, https://www.llsform.org/ho0999SER/LRK1FSG/index.html.

Aplastic Anemia and Treatment-Related Complications Influence Career Choice

Read more about Aplastic Anemia and Treatment-Related Complications Influence Career Choice

In December 1992, I was an 8-year-old, halfway through second grade, when strep throat and a urinary tract infection just wouldn’t go away. A late-night trip to the emergency room revealed dangerously low levels of platelets, which explained this and the severe bruising all over my body and rashes on my joints. My platelets were under 2,000 and I was supposed to have 250,000.

Clinical Trial Clinical Trial: A type of research study that tests how a drug, medical device, or treatment approach works in people. There are several types of clinical trials. Treatment trials test new treatment options. Diagnostic trials test new ways to diagnose a disease. Screening trials test the best way to detect a disease or health problem. Quality of life (supportive care) trials study ways to improve the comfort of people with chronic illness. Prevention trials look for better ways to prevent disease in people who have never had the disease. Trials are in four phases. Phase I tests a new drug or treatment in a small group to see if it is safe. Phase II expands the study to a larger group of people to find out if it works. Phase III expands the study to an even larger group of people to compare it to the standard treatment for the disease; and Phase IV takes place after the drug or treatment has been licensed and marketed to find out the long-term impact of the new treatment. Low Dose Danazol for the Treatment of Telomere Related Diseases

Status

Recruiting

Study Date (Range)

March 1, 2018 - April 30, 2026

Bone Marrow Disease(s)

Aplastic Anemia

Age Group

3 years and older

DNA is a structure in the body. It contains data about how the body develops and works. Telomeres are found on the end of chromosomes in DNA. Some people with short telomeres or other gene changes can develop diseases of the bone marrow, lung, and liver. Researchers at the…

Patient Trusts Her Instincts in Finding the Right Treatment

Read more about Patient Trusts Her Instincts in Finding the Right Treatment

I never thought I would be diagnosed with cancer. I taught exercise classes, walked every day, ate a Mediterranean diet, and paid attention to products I used on my skin. I became a certified health coach and taught healthy living classes.

PNH Patient Travel Assistance Fund

The AAMDSIF PNH Patient Travel Assistance Fund is available to U.S.-based PNH patients for up to $800 in travel assistance per patient, per year, to see a PNH specialist or get a second opinion from a PNH specialist. Grantees will be permitted to travel with one companion utilizing funds from the grant. Grants will be awarded based on the thorough completion of the required application form and the submission of all required documentation.

Read more about PNH Patient Travel Assistance Fund

I Was Alone With MDS Until I Connected With Others on Social Media

Read more about I Was Alone With MDS Until I Connected With Others on Social Media

I sat quietly in the oncologist oncologist: (on-KAH-luh-jist) A doctor who specializes in the treatment and prevention of cancer. ’s office.

In Treatment at NIH

Read more about In Treatment at NIH

Texas native John Vasquez led an active life until he started to experience unusual symptoms in 2015, including an incidence of numbness on one side of his body.

Confronting Challenges in Finding Matches for Multiracial Patients

Read more about Confronting Challenges in Finding Matches for Multiracial Patients

34-year-old Krissy Kobata is a passionate patient and advocate/activist. Diagnosed in 2008 with MDS, she’s the epitome of resilience as she has waited for years to find a matched donor.

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