The Serenely Guided Foundation is a 501 (c)(3) organization dedicated to improving the lives of patients, families, caregivers and those affected by all rare diseases. Our focus is providing easy access to resources in the areas of wellness, nutrition, and awareness. It's our mission to help guide the patient and caregiver journey with ease.
Our Support
Making a difference means creating a landscape of change in how we approach rare disease resources for patients and caregivers. It starts with an understanding of what the everyday looks like - from the onset of symptoms, to diagnosis, to treatment, and beyond. Creating a guide for resources in wellness, awareness, patient navigation, and youth education will reimagine and empower the future for the rare disease community.
Patient Resources
Providing support for patients and families who need assistance through unique partnerships with consumer brands that provide nutrition, wellness, clinical trials and genetic testing resources. This support is customized based upon patient and family needs.
Youth Workshops
Our Storytime & Workshop Program specially curated for grades K-12 provides fundamentals in learning and awareness of rare diseases, genetic testing, clinical trials as well as understanding physical challenges and disabilities while encouraging empathy and understanding.
Caregiver Wellness
Caregivers take on an imperative role for their loved ones with rare diseases. We believe in funding efforts to provide wellness resources that include fitness, nutrition, and self-care. Learn more through our latest partnerships with how you or someone you love can benefit.
COMING SOON
Rare Disease Awareness & Blood Drive
Saturday, July 26th 9am-3pm @ StretchLab
200 Main Street, Stoneham, MA 02180
Summer is HERE!
Virtual Walk, Run or Bike for Rare Disease Resources
Register to Walk/Run/Bike/Scooter Your Favorite 5k Course -We'll send you a t-shirt -
DM us a picture on Instagram when you're done!
Walk, bike, run, scooter with a group, by yourself, or with a team to help us raise funds for rare disease patients and caregiver resources like nutritious meals. Group rates are available.
Email: sarah@serenelyguidedfoundation.org for more details.
AWARENESS
What is a Rare Disease?
A rare disease is defined as a condition that affects fewer than 200,000 people in the United States or 1 in 2,000 individuals worldwide. We support Rare Disease Day, a day for the world to raise awareness and generate change for the 300 million people worldwide living with a rare disease. Click the button below to learn more.
YOUTH HEALTH EMPOWERMENT
Classroom Learning & Volunteering
Looking to empower your class with outside learning about health and rare disease? Our 30-minute informational sessions are fun, interactive, and we bring in outside professionals and kids who are affected and tell about their journey. Schedule a session today! Looking to have your child volunteer at our next event? Email us for more information.
NUTRITION
Solutions for Nutrition Insecurity
With the support of Mom's Meals, we are innovating how rare disease patients access nutritious, dietary-friendly meals through the donation of meal cards we are providing. Read more about this initiative in the Mom's Meals article below.
CLINICAL TRIALS
FINDING YOUR CLINICAL TRIAL WITH EASE
The Serenely Guided Foundation has partnered with Carebox Connect to provide patients, caregivers, and healthcare professionals an easy way to search and match to rare disease clinical trials. We like to call it your Clinical Trial Concierge.
Are you a Patient or Caregiver in Need of Resources?
Rare disease patients and caregivers are busy managing symptoms, diagnosis, treatments, and clinical trial studies and need help with resources to manage their day, like post-surgery clothes, dietary-friendly meals, medical equipment, toys for pediatric in-patient needs and so much more. Submit a request below if you are a patient or caregiver and let us know what will help during these challenging times.
Mom's Meals donation helps support those navigating a rare disease diagnosis.
A rare disease diagnosis can be an overwhelming journey, filled with uncertainty, medical appointments and financial strain. For many families, the added challenge of accessing proper nutrition is an even more overwhelming barrier that can affect health outcomes. That’s why organizations like Serenely Guided Foundation, founded by Sarah Woods after her own three-year battle to find a diagnosis, are using quality nutrition to make a difference.
ARE YOU A PATIENT IN NEED OF A MEAL CARD? WE CAN HELP! Healthy, convenient, dietary-friendly meals home-delivered during diagnosis, treatment, recovery, and clinical trials.
- High quality, refrigerated, ready-to-heat meals
- Menus to support common health conditions
- Choice of meals from a broad menu
- Vast delivery footprint to any continental U.S. address
- Shipping included!
INTRODUCING...
The Affinity Program - home-delivered meals available through Mom's Meals®
We are thrilled to offer patients and caregivers access to home delivered meals, available through Mom's Meals® during challenging times of diagnosis, treatment, recovery and clinical trials.
Since April 2025, we have provided 12 Meal Gift Cards to Rare Disease Patients and Caregivers in Need.
Rare diseases that have impacted these families: Osteosarcoma, Pediatric Carcinoma, Rett Syndrome, Glutaric Acidemia 1
(ga1), Homozygous Familial Hypercholesterolemia, Extrarenal Malignant Rhabdoid Tumor, PAMI,
Atypical HUS,
Von Hippel-Lindau (VHL) Syndrome,
Pediatric high grade neuro epithelial tumor with BCOR mutation.
Caregivers and patients have so much to handle with diagnosis, testing, treatments and clinical trials, and often times, don't have time or don't feel well enough to cook healthy meals. These meal e-cards provided are for dietary-friendly, ready-to-heat, home-delivered meals making life a little bit easier and healthier during mealtime. Help us to provide these e-cards by donating.
February Rare Disease Awareness
& Blood Drive Event
On Saturday, February 1st we partnered with Boston Children's Hospital and WellSense Health Plan to host a Rare Disease Awareness & Blood Drive Event in Stoneham, MA. We gave out informational gift bags on rare diseases, which also contained local resources and ways to help bring awareness and support to patients in need of help with financial and nutritional resources. Also included were custom stress balls from 4imprint, which were part of a grant awarded to our foundation, as well as BCH t-shirts and first-aid kits by WellSense.
Rare Disease Awareness & Blood Drive Event
Thank you to our blood donors, sponsors, and volunteers!
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Thank you to our event sponsor!
A big thank you to WellSense Health Plan for helping sponsor our Rare Disease Awareness and Blood Drive Event! WellSense is a nonprofit health insurance company serving more than 700,000 members across Massachusetts and New Hampshire through Medicare, Individual and Family, and Medicaid plans.
Rare Student Volunteer Spotlight!
Meet Kinley! Kinley is a rare disease warrior. She is a Boston Children's Hospital patient who receives IVIG (intravenous immunoglobulin) every 3-4 weeks at BCH for a rare immunodeficiency. IVIG treatments involve infusing antibodies into a vein to strengthen the immune system. It's used to treat autoimmune disorders, infections, and immunodeficiency conditions. She’s currently in 8th grade and has been undergoing these treatments for nearly six years. Kinley shined as our Rare Disease Awareness & Blood Drive Event Volunteer and received a Serenely Guided Foundation Community Service Award for her time and dedication to our cause. Know a rare disease warrior who would like to be featured? Know a great volunteer in middle or high school? Help us bring awareness to rare diseases and the importance of volunteering in the community by sending us an email.
Rare Student & Volunteer Spotlight
Meet Sullivan! He is a rare disease warrior and patient at Boston Children's Hospital. Sully was diagnosed with Hereditary Hemorrhagic Telangiectasia (HHT ), a rare and genetic blood vessel disorder in 2023 through GeneDX. Symptoms of HHT present themselves in childhood and increase in adulthood and require scans on virtually every organ to detect for arteriovenous malformations (AVMs). Sully is one of our latest Serenely Guided Foundation Community Service Award recipients for his efforts in passing out flyers and making his community aware of our February 1st Rare Disease Awareness Event & Blood Drive. He is in 6th grade and has been volunteering in his community since the age of 4. He loves all sports and his favorite is football.
Would you or your family like to volunteer for our next event or with our Youth Workshop Sessions? Send us an email!
Sully's Story & GeneDX Genetic Testing
Sullivan, who was diagnosed in 2024 with HHT through a GeneDX test, recently spoke to Boston's WHDH-Channel 7 News about keeping a positive outlook on life. Sully talks about his symptoms of nosebleeds, as well as headaches both on and off of the field, and how he continuously stays focused through fueling his passions of being a student athlete, no matter what sport he is playing.
Serenely Guided Rare Spotlight ~ GA1 Glutaric Acidemia Type 1
Meet Emerald! Emerald is 2 yrs. old and from Little Rock, Arkansas and has just relocated to Wisconsin for better medical treatment. Emerald was diagnosed with GA1 Glutaric Acidemia Type 1. This is a recessive genetic disorder making it extremely rare, because both parents have to have a break in their GCDH genetic coding. GA1 is an enzyme deficiency, causing Emerald's little body to not be able to break down proteins, they can then build up and go to her brain, causing damage to her basal ganglia. For her family this means 12 hospitalizations in 2 years, 3-5 doctor/therapy appointments a week, and lots of equipment to aide in development.
Please support Emerald and her family through following her journey on FB @ Warrior Emerald
Serenely Guided Rare Spotlight
~ Von Hippel-Lindau (VHL) Syndrome
Hallie is fighting for her life with Von Hippel-Lindau Syndrome, a rare, inherited disorder that causes tumors and cysts to grow in various parts of the body. These growths can occur in the brain, spinal cord, eyes, inner ear, adrenal glands, pancreas, kidneys, and reproductive tract. Some of these tumors can cause serious complications depending on their size and location. VHL is caused by a mutation in the VHL gene. Hallie has 4 beautiful boys and is about to participate in a clinical trial in California.
Crayola Flowers for Good
Need flowers? Support our Crayola Flowers for Good Campaign! When you design your bouquet, 10% of the sale goes to the Serenely Guided Foundation.
Meals for Patients & Caregivers
Help us provide e-gift cards for meals to rare disease patients and caregivers nationwide. Click to donate to our SGF Meal Card initiative.
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photos by Harry Ehrlich Photograpahy
2024 Fundraisers, Storytimes, and Public Events for Rare Disease Awareness
The Rare Cancer Research Foundation - Breaking Down Barriers
The Rare Cancer Research Foundation (RCRF) is a 501(c)3 dedicated to curing rare cancers by breaking down research barriers through patient-powered collaborations.
Pattern.org
One of RCRF's initiatives, pattern.org, empowers rare cancer patients to donate living tissue from an upcoming procedure at any hospital in the U.S. that is then sent to researchers studying their disease. RCRF's other patient-centric offerings include custodial biobanking, where patients can store their tissue or blood and then decide where and when they want it used for clinical and/or research use, and the Pattern Data Commons, which allows patients to share their de-identified clinical and genomic data with researchers and will provide important insights into treatments and ongoing clinical trials.
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About Serenely Guided Foundation
Founder Story
The Serenely Guided Foundation was founded by Sarah Woods in 2023 after her and her son were diagnosed with Hereditary Hemorrhagic Telangiectasia (HHT). During that time, Sarah noticed patients and caregivers often feel lost throughout the diagnostic journey in knowing what resources are available and how to access them in an easy way. By partnering with some of the world's most cherished brands and providing a direct line to nutrition, wellness, wearable devices, clinical trial access, and rare disease awareness, Sarah became inspired to create a fresh new way of giving.