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TDD Parent Guidebook Digital

The TANGO2 Deficiency Disorder Parent & Caregiver Guidebook provides essential information about TANGO2, a rare genetic disorder characterized by neurodevelopmental delays and various metabolic symptoms. It includes insights from families, symptoms, potential treatments, and the importance of B vitamins in managing the condition. The guide aims to support families navigating the challenges of TDD and foster a sense of community among those affected.

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mohana priya
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0% found this document useful (0 votes)
36 views24 pages

TDD Parent Guidebook Digital

The TANGO2 Deficiency Disorder Parent & Caregiver Guidebook provides essential information about TANGO2, a rare genetic disorder characterized by neurodevelopmental delays and various metabolic symptoms. It includes insights from families, symptoms, potential treatments, and the importance of B vitamins in managing the condition. The guide aims to support families navigating the challenges of TDD and foster a sense of community among those affected.

Uploaded by

mohana priya
Copyright
© © All Rights Reserved
We take content rights seriously. If you suspect this is your content, claim it here.
Available Formats
Download as PDF, TXT or read online on Scribd
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TANGO2

D E F I C I E N C Y D I S O R D E R
PARENT & CAREGIVER GUIDEBOOK

VERSION 1 - MARCH 2025


This resource is provided for educational and informational purposes only and is not
intended to provide medical advice. The information provided herein are only
personal insights and experiences shared by participants to provide additional
information to the community. Those seeking personal medical advice should always
consult with a licensed physician. If you think you may have a medical emergency,
call 911 or go to the nearest emergency room immediately. Neither the Foundation nor
its employees, nor any contributor to this resource, makes any representations,
express or implied, with respect to the information provided herein or to its use.
TABLE OF CONTENTS

Welcome Letter .......................................................................................................... 2

About TANGO2 and TANGO2 Deficiency Disorder ……………………………….................... 3

What Causes TDD? ……………………………………………………...................…………………............. 3

Message From a Mom .............................................................................................. 4

What are the Symptoms of TDD? …………………………………...........……….…..................….. 5

Other Conditions Associated and Prevalence……………………....………………................... 6

Is There A Cure and What Treatments are Available? ……………………………................… 7-11

B Vitamins
Vitamin Testimonials

General Health Medical Management ………………………………..…….........……………......... 12-15


Building a Care Team
Tips from a TDD Mom
Routine Medical Visits
Emergency Medical Management

Sibling Sentiments .............................………………………………………….…..................…….... 16

Resources and More Information …………………………………………..........………………............. 17

Research …………………………………………………………………………………....................…............. 19-20

Get Involved ………………………………………………………………….…..................……………........... 21

1
WELCOME LETTER
Dear Families,

When my daughter Thea was first diagnosed with TANGO2 deficiency disorder at age
2, our world turned upside down. We felt completely alone. No one had heard of this
disease, and our doctor told us there wasn’t enough research or data to predict what
might happen. He encouraged us to find other families, to connect with others who
might share our journey, and reminded us that we would be our child’s best advocates
because doctors simply didn’t have all the answers.

So, we did just that. We reached out, and after much searching, we found one other
family in the U.S. who was also navigating life with TDD. Together, we created a
Facebook group—a small space where we could support one another and exchange
experiences. Slowly but surely, more families joined. With each new connection, we
felt a little less alone.

As our group grew, we began to recognize patterns—what made our kids better, what
worsened their symptoms, and what made them so incredibly special. Along the way,
the Morris family suggested we take a bold step forward: creating a foundation to
support research and education. That’s how the TANGO2 Research Foundation was
born in 2018. Partnering with dedicated doctors and researchers, we’ve come so far in
understanding this rare disease.

Looking back, it’s amazing to see the progress we’ve made—not just in knowledge, but
in building a community of families who truly understand and support each other. I no
longer feel alone, and I hope you’ll find that same comfort in this community.

This welcome packet is designed especially for you—new families stepping into this
journey. I remember wishing I had a guide when we first faced this diagnosis,
something to help navigate the overwhelming emotions and uncertainties. This
guidebook is a dream come true for me. It’s a resource to help you feel less alone, to
give you tools and knowledge, and to remind you that you are now part of a
community that cares deeply about you and your child.

Welcome to the TANGO2 family. You are not alone!

With heartfelt support,

Veronica Jones-Swetek
“Thea’s Mom“
Outreach Committee Member, TANGO2 Research Foundation

2
TANGO2

What is TANGO2?
TANGO2 (Transport and Golgi Organization2) is the name of the gene that contains a
mutation or genetic change. It is located on chromosome 22 (22q11.21). Genes are like
sentences made of the letters ATCG. A genetic change can include replacing a single letter
with the wrong letter, insertion or deletion of a single letter, and even large deletions of
multiple letters. These genetic changes can reduce the function of the gene or stop the
function completely.

What is TANGO2 Deficiency Disorder or TDD?


TANGO2 Deficiency Disorder is also known as TANGO2-related disorder, TDD, TANGO2-
related deficiency disorder, TANGO2 disease, and TANGO2-Related Metabolic
Encephalopathy and Arrhythmia. It is a rare condition that was first characterized in 2016 and
is hallmarked by neurodevelopmental delay and other metabolic and neurological symptoms.

What causes TDD?


TDD is an autosomal recessive genetic disease. This means that both mother and father have
to carry a change in one of their TANGO2 genes for a baby to inherit this condition.
Disorders inherited in a recessive pattern occur when an individual inherits two variants in a
gene for the same trait, one from each parent. If an individual receives one normal gene and
one gene for the disease, the person will be a carrier for the disease, but usually will not
show symptoms. The risk for two carrier parents to both pass the defective gene and,
therefore, have an affected child is 25% with each pregnancy. The risk of having a child who
is a carrier like the parents is 50% with each pregnancy. The chance for a child to receive
normal genes from both parents and be genetically normal for that particular trait is 25%.
The risk is the same for males and females.

3
MESSAGE FROM A MOM
“Going through this journey with Otis has not been easy, there have been
moments of feeling lonely and isolated. Relationships with family and friends
have changed and sometimes it has been very sad. I have had to focus on
where my priorities are and where my energy needs to be spent. Life has
been narrowed into a smaller space somewhat but that’s okay. Becoming a
‘medical mum’ is not a place I expected to be but that’s also okay. I have
accepted the new world we are in; we don’t travel as much as we hoped we
would have and instead of learning new foreign languages we have been
learning the medical language. How many people know to pronounce
encephalopathy and understand what that means? My perspective has
changed a lot, I see light and dark much more differently and know now that
the two can overlap, we can be brave and scared at the same time, we can
be firm with doctors and respectful simultaneously.

Our children are wonderful and have so much to teach us.”

Sheean Hughes
“Mom to Otis”
England

Scan this code to read


more stories about TDD
warriors and their families

4
SYMPTOMS
What are the symptoms of TANGO2 DEFICIENCY DISORDER?
Although there are some common symptoms and conditions across those
affected by TANGO2 deficiency disorder (TDD), there is also broad variability
of presentation and severity.

Symptoms at Baseline:
Developmental delay
Intellectual disability: Present in almost all individuals with varying severity
Poor coordination and gait abnormalities
Speech difficulties
Strabismus or lazy eye
Seizures: Present in 40-50% of individuals
Hypothyroidism (low functioning thyroid gland): Present in 40-50%
individuals
TANGO2 spells: characterized by head tilt, body tilt, abnormal posturing,
loss of muscle control, unsteady gait, drooling, and extreme fatigue.
Typically no laboratory abnormalities are seen during these episodes.

Acute Symptoms:
Metabolic Crisis - Can be triggered by fasting, infection, dehydration,
exposure to excessive heat, etc. Symptoms can be disorientation,
worsening gait abnormality, swallowing difficulties, muscle weakness, and
red urine. Laboratory abnormalities and abnormal electrocardiogram(EKG)
are seen during these episodes. Muscle breakdown can result in high levels
of Creatine kinase (CK) in blood. High levels of lactate and liver enzymes
can also be seen in addition to low glucose levels at times. Heart tracing
can show prolonged corrected QT interval (QTc) which can develop into
serious heart arrhythmias.

Cardiac Crisis - About ⅔ of individuals with TDD in acute metabolic crisis


can develop cardiac crises which is characterized by serious ventricular
tachycardia (fast heart rate), or cardiomyopathy (weakness of heart
muscle), or stopping of the heart (cardiac arrest).

5
22Q AND TDD PREVALENCE
Are there other conditions associated with TDD?
Some individuals with TDD have also been diagnosed with DiGeorge syndrome (22q11.2 deletion
syndrome). For more information about DiGeorge Syndrome go to 22q.org.

How common is TDD?

Conservatively, it is estimated that there are roughly 8,000 individuals worldwide with this rare
disease. However, we are aware of less than 300 children and adults that are currently diagnosed.

6
TREATMENTS
Is there a cure for TDD?
Currently there is no cure for TDD. However, the TANGO2 Research
Foundation’s (T2RF) mission is to lead the way in finding a cure for
TANGO2 Deficiency Disorder. Our vision is to accelerate research and
therapeutic development, advocate and promote awareness, support and
connect families as well as drive early and accurate diagnosis.

What treatments are available?


B Vitamins - While there is no known cure for TDD, there is evidence that
suggests that including a high daily dose of B vitamins has potential to greatly
improve the health of individuals living with TDD. Multiple animal models and
information reported from families in the TANGO2 Natural History study show
that vitamin B5 helps prevent metabolic crisis and for some individuals can
help improve energy and reduce TDD “spells”. Furthermore, vitamin B9 has
corrected heart arrhythmias in TANGO2 animal models and heart cells. It is
unknown if there are other B vitamins that serve a critical role in the health of
individuals with TDD. While B5 and B9 have specifically been referenced in
TDD research, the current recommendation from the T2RF Clinical Advisory
Board is for children and adults to take a multivitamin or B complex that has
all 8 B vitamins that are at least the Recommended Daily Allowance (RDA)
from the Food and Drug Administration (FDA). Although more research is
needed to determine the correct dose of vitamins, many families report taking
at least 50 mg or more of B5 along with the B Complex which significantly
improves health outcomes for individuals affected with TDD.

Treatment for TDD focuses on managing each individual’s specific symptoms


and often involves a multidisciplinary team of specialists. Their coordinated
efforts aim to address the diverse manifestations of the disorder.

Consult your health care provider to help determine the best treatment
options for your TDD warrior.

7
B VITAMINS
Chemical
Function Sources
Name

Energy metabolism, nerve function,


B1 (Thiamine) Whole grains, pork, nuts
converting food into energy

B2 (Riboflavin) Energy production, cell growth, antioxidant Dairy, eggs, leafy greens

B3 (Niacin) DNA repair, energy metabolism Poultry, fish, peanuts

Coenzyme A synthesis, metabolism,


B5 (Pantothenic Acid) Meat, avocados, mushrooms
hormone production

Amino acid metabolism, neurotransmitter


B6 (Pyridoxine) Bananas, potatoes, chicken
synthesis

Fatty acid synthesis, gene regulation,


B7 (Biotin) Eggs, salmon, almonds
carbohydrate and fat metabolism

DNA synthesis, cell division & growth, red Spinach, lentils, fortified
B9 (Folate)
and white blood cell formation cereals

Red blood cell formation, nerve function,


B12 (Cobalamin) Meat, fish, dairy
DNA production

8
B VITAMIN TESTIMONIALS

Sol, 5 years old from Argentina

“Sol has changed 100%. She has changed incredibly. She


does not need rest periods and has energy throughout the
day, has slightly longer attention span, her walk is not
twisted and or altered as it was”.

Sebby, 13 years old from United Kingdom


“Sebby has truly amazed us. He made it to the top of a 20
foot climbing wall all by himself! He has become really strong
recently and his coordination has developed so much-
something we never thought may happen in his younger days.
What a different boy we have after a year of being on all of
the B-Vitamins. Honestly, the research is so life changing. His
energy and strength is unbelievable. His speech is so
good..others can understand him and can barely recognize
him from a year ago.”

John Martinez, 18 years old from USA

Since taking B vitamins, John’s energy has improved a lot. He’s


been playing soccer for over 2 hours now with more energy
and less tiredness during the day. The power of the vitamins
are awesome and we’re very thankful for the foundation.
Pictured here is also the first time that we’ve gone to the
beach and John was able to enjoy the ocean and walk on the
board walk.

9
PARENT PERSPECTIVE ON B VITAMIN DOSAGE

A MESSAGE FROM
OUR FOUNDERS

Ryan’s Journey with TDD


Ryan, is a loveable, funny 23-year-old young man who has TDD. More than 20 years
ago we first noticed that a Flintstones multivitamin helped alleviate some of the spell-
like symptoms Ryan was suffering from. It was this observation and those from other
parents that helped drive the Natural History Study of TANGO2 and the discovery that
B vitamins are extremely beneficial to our kids.

Current Focus and Collaborative Efforts


Throughout our TANGO2 journey, we have discovered that new information often
brings new questions. The most pressing question that many families are now asking
is “How much of the B vitamins should I give my child?” This question is now a priority
for the research team at Baylor College of Medicine leading the TDD Natural History
Study (NHS).

Research Insights and Key Findings


While these doctors gather evidence-based data to determine dosage
recommendations, it is up to families to collaborate and use the available
information to develop the best possible recommendations. Below are a few of the
facts we know from research followed by what our family has chosen to do for
dosage of B vitamins for Ryan.
Research is very clear that B5 (Pantothenic Acid) is very important for those who
have TDD.
Multiple animal models and information reported from families in the NHS show
that B5 specifically helps prevent metabolic crisis and in some can help improve
energy and reduce the TDD “spells”.
B9 has corrected heart arrhythmias in TDD animal models & heart cells.
It is unknown if there are other B vitamins that serve a critical role in the health
of individuals with TDD.
The current recommendation from the TDD Clinical Advisory Board is for children
and young adults to take a multivitamin or B complex that has all 8 B vitamins that
are at least the Recommended Daily Allowance (RDA) from the FDA but most
families take more.

10
PARENT PERSPECTIVE ON B VITAMIN DOSAGE

Ryan’s Dosage Strategy, Experience and Results


Ryan was taking a B50 complex from 2019 - 2020. However, he still suffered with
daily spells, extreme fatigue and poor quality of life. His experience and our families
takeaways from existing research on TDD led us to believe that Ryan needs more B5
than the FDA’s recommended daily allowance that is geared towards a healthy person
who has functioning TANGO2 genes. Our feeling is that our kids most likely need a lot
more than this minimum. We have increased Ryan’s B5 to over 500 mg daily and plan
to add even more if he is sick or shows any increase in fatigue or “spells”. Although
this dose of B5 is over 100 times the RDA amount of 5 mg, B5 is water soluble and not
known to build up in the body which makes us comfortable in our choice to raise it.
Ryan is thriving on a higher dose. He no longer has spells or extreme fatigue. He is an
adult over six feet tall and 150 pounds taking 500 mg of B5.

There are reports from families of younger children who saw noticeable improvement
in energy when the dosage of B5 was increased from 5mg to 100mg.

The Future
If you would like to connect with a family who has a child of similar age to yours to
learn more about their dosage and experiences, please email
[email protected]. We hope to have research evidence based data on B vitamin
dosage in the near future. Ultimately this answer will come from those participating in
the Natural History Study. It is through families sharing their experiences that we can
uncover what works best. If you are not yet a part of the TDD Natural History Study
contact [email protected] for more information.

Together we will learn more!

Mike and Kasha Morris

Co-founders of the
TANGO2 Research Foundation
“Ryan’s Mom and Dad”

11
GENERAL HEALTH MANAGEMENT
In addition to daily B vitamins, it has been reported that individuals with TDD experience less symptoms when
they do the following:

Stay hydrated
Eat regular, frequent meals that include
carbohydrates and healthy low-fat proteins
Have regular bowel movements and avoid
constipation (some families report that their
doctors recommend laxatives and stool
softeners such as Senokot (docusate sodium)
and Miralax (polyethylene glycol 3350)
Exercise frequently without overheating or over
exertion
Wash hands regularly to prevent illness and
avoid public places when possible during the
flu season to prevent illness
Individuals living with TDD who are ill should
not go long periods without eating/drinking.

Building a care team


Families play a crucial role in managing TDD working closely with healthcare professionals.
Symptoms are typically managed by a team of doctors, medical professionals and therapists
that treat symptoms as they arise.

Healthcare Specialists - The range of symptoms and challenges for individuals living with
TDD are variable but many TDD individuals see a range of medical specialists including: a
pediatrician, metabolic and genetic specialist, neurologist, endocrinologist and cardiologist.
Other healthcare professionals - Others might include Dietician, Gastroenterologist,
Physical, Speech and Occupational Therapists
Social and Educational services personnel - persons with intellectual disabilities may also
eventually have a team of professionals who assist in identifying and accessing public and
private educational and social services
Other methods to manage care of individuals with TDD include:
Yearly blood draws to check for hypothyroidism
Initial baseline audiology and eye exams. Follow-up exams may be yearly
Use of “mito cocktail,” which may include the recommended B vitamins in addition to
CoQ10, and levocarnitine (note: some doctors have recommended the liquid form of
CoQ10 stating that it is more effective than the powder)

12
MESSAGE FROM A MOM
Tips from a TANGO2 Mom
Create a Routine: Establishing a consistent daily routine, if possible, can provide
stability and reduce stress.

Build a Support Network: Cultivate a network of healthcare providers, fellow


caregivers, and supportive friends.

Be an Advocate: Actively participate in your child’s healthcare by communicating


with doctors and specialists.

Celebrate Small Wins: Acknowledge and celebrate the small achievements and
positive moments.

Taking care of yourself while caring for a child with a rare disease is an ongoing
process. By prioritizing your well-being, seeking support, and implementing practical
strategies, you can create a more sustainable and fulfilling caregiving journey.
Remember, by taking care of yourself, you are better equipped to take care of your
child.

Sheean Hughes
“Mom to Otis”

13
GENERAL HEALTH MANAGEMENT
Tips for Routine Medical Visits
Essential Items To Bring:
TDD Emergency Protocol Letter: Bring a copy of your TDD loved one’s Emergency
letter. Request that the doctor review it, sign it, add office or hospital letterhead
and add it to your child’s medical record.
Medical Records: Bring copies of pertinent test results including laboratory
reports, genetic tests, and imaging studies. If available, bring electronic versions
as well.
Videos: If you have recordings of seizures, unusual movements, or behaviors,
bring them to provide the doctor with a comprehensive view of your loved one’s
condition.
Previous Visit Notes: Having clinical summaries from the last related medical
visit can offer valuable context for the current visit.
Note-Taking Materials: Document important information, recommendations and
answers to your questions during the appointment.
Tips and Tricks for Your Visit:
1. Be as specific as possible when describing symptoms. Don’t downplay or
exaggerate.
2. Encourage your child to share their concerns and questions during the visit if they
are able. This can help them feel involved in the process and build advocacy
skills.
3. Invite another adult to help take notes, offer support and care for the child so
you can focus on the conversation with the doctor.
4. Don’t be afraid to ask a question if you are confused by what the doctor is
saying. You may want to repeat answers back to ensure you’ve captured
everything.
5. Ask when/if you should schedule your next visit.
6. If tests are done, ask when you should expect to get the results.
7. Be assertive and do not forget that you are the expert when it comes to your
child.
8. Before you leave make sure you have discussed your top concerns and got
answers to your top 3 questions.
9. Consider putting everything into a binder and group visit summaries, test results,
treatment summaries and medication history in separate sections. If possible keep
in chronological order with the most recent information first.
10. Ask for a 24 hour emergency care number that the doctor or on-call doctor can
be reached at in case of emergency.

14
EMERGENCY MEDICAL
MANAGEMENT
When to go to the hospital
If your loved one with TDD is sick and unable to consume liquids and nutrition,
notify your healthcare provider as soon as possible.

Emergency protocol letter


If you need to go to the Emergency Room (ER), call your loved one’s doctor and ask
them to call the ER to let them know you are coming. Bring the emergency protocol
letter (see QR code) with you to the hospital explaining TDD. When you arrive at
the hospital, the recommended labs should be drawn immediately and heart
monitoring started even before labs return.

Emergency Hotline for Medical Professionals


+1-860-598-0955 The TANGO2 Hotline provides life-saving consultations to
clinicians treating patients with TDD. This includes patients that are hospitalized,
currently in crisis, or at risk of crisis. Clinicians can call this emergency number to
request consultation from TDD medical experts at Texas Children’s Hospital. Go to
tango2hotline.org for more details. Please share this resource with your medical
team.

15
SIBLING SENTIMENTS
“There’s no other way to cut it - being in a rare disease family means you are a part of something different/
special/atypical/unique... rare. However, growing up with a special needs sister, I didn’t always feel far from
“normal.” Like other siblings, we grew up together, shared moments of love, frustration, anxiety, and all the
experiences that come with being a brother. I took her out trick-or-treating and accompanied her to school
dances; we shared our favorite movies and snuck each other treats behind our parents’ backs. As a brother, I
can confidently say that I didn’t miss out on any common sibling events. There are, on the other hand,
experiences that a non-rare sibling won’t experience that my sister and I had to work through/overcome/
appreciate. Here are some of them:
My sister has had trouble with speech. This meant, as a brother, I was also an interpreter. Growing up
explaining her thoughts to others, we established a unique bond- noticing subtle movements, patterns,
syllables, and picking up on meaning before sentences left her mouth. Today, I can almost see the thoughts
appear in her head before she reaches for the words. That is a rare skill we developed because we had to
and is now a super-natural token of the strength of our connection.
My sister needed extra support. This meant, as a brother, I was also
an extra parent. I learned to be responsible at a young age, caring
for my sister as I learned to care for myself. When my parents
couldn’t get through to her, I could, because I was a brother and
not a mother/father. Today, I carry the empathy, understanding,
and advocacy that this experience nurtured in me.
My sister needed independence. This meant, as a brother, I was
also her driver. While non-rare siblings grow up finding their unique
sense of self and fly the nest, my sister is bound
in certain ways to her abilities... but with her brother, she can tear some of those barriers down. When I got
my license, she got free rides. Today, we still take drives to go shopping, get coffee, and go out to dinner (her
choice) because she needs a brother to do the things she wants to do (and I get to join).”

~ Benjamin Mitchell

Walter (9) “I like having a brother with TANGO2 because


Sebby is unique and he makes me laugh. It’s taught me a
lot of things. I am patient and understanding of others.
Although I wish he didn’t have it.”

Joe (15) “Sebby is different and fun because he is just


Sebby!”

16
SUPPORT, INFORMATION & RESOURCES
Support, information & resources for TDD families
While much about TDD still remains a mystery, we are learning more every day about early and accurate
diagnostics, managing symptoms, preventing crises, and treatments. Here are some excellent resources for
more information:

The TANGO2 Research Foundation website has a tremendous amount of valuable


information and is the leading global resource on TDD.

TANGO2 YouTube Channel has numerous playlists of


symptoms, research presentations, messages from families
and so much more.

TANGO2 Family Facebook group is a friendly place where families worldwide


support and help one another.

The TANGO2 Research Learning Network is an excellent


resource where patients, families, healthcare professionals
and researchers can all go to share knowledge and
communicate with each other.

Regional Coordinator program The TANGO2 Research Foundation offers a


regional family support program to match newly diagnosed families with others in
their country or region. Email [email protected] to be matched with a T2RF
Regional Coordinator near you.

Rare Care Chronicles by The TANGO2 Research


Foundation - is dedicated to exploring the unique
experiences of TDD and rare disease care. Each episode
brings you closer to the heart of our community, offering
valuable insights, practical advice, and inspiring stories.

Family Resources: Emergency Protocol letter, Educator’s Guide, Glossary of Terms,


and other resources

17
SUPPORT, INFORMATION & RESOURCES

Below are affiliate organization that work with the TANGO2 Research Foundation to support our mission.
These organizations may focus on fundraising, advocacy, research, or community support, helping to expand
our reach and impact in their areas. While they may operate independently, they share our commitment to
finding better treatments and ultimately cure for TANGO2 deficiency disorder.

The Canadian TANGO2 Rare Disease Foundation's


mission is to improve the lives of those patients and
families affected by TANGO2 related disease
through advocacy, research and support.

TANGO2UK is a small UK based charity looking to


work with individuals and families affected by
TANGO2 deficiency disorder and support clinicians
who have patients with it.

The primary goals of No Myolyse are to raise


awareness and educate the public about myolysis, as
well as to collect donations to support medical
research.They also aim to inform, listen to, and guide
families.

18
RESEARCH
Publications
Since the TANGO2 gene was first characterized in 2016
many peer reviewed journal articles have been written about
this rare disease, as a result of grant funding by the
TANGO2 Research Foundation.

You can view published research on TDD on the TANGO2 Research Foundation website
or by using this QR code.

Natural History Study


The TANGO2 Natural History Study or patient experience study is a critical research
initiative aimed at understanding the progression of TDD over time. Given the limited
current knowledge about TDD, this study provides invaluable data that can assist
clinicians in managing and potentially treating individuals experiencing crises as
well as other conditions associated with TDD. Participation includes in-depth
interviews with the study team, the collection of medical records, yearly survey
check-ins and other activities over time. These efforts are essential for facilitating
larger international patient-centered research initiatives focused on treatment and
management strategies for TDD. We highly encourage participation in this significant
study, as each individual's experience with TDD contributes valuable insights. The
research team will work with participants to access pertinent medical and family
histories, as well as diagnostic test results.

To share your TDD experience


and become a participant in the TANGO2
Natural History study please email:
[email protected] to enroll

19
COLLECTIVE RESEARCH IMPACT
We envision our foundation as the vehicle
committed to driving the research forward:
funding grants, enhancing communication and
coordinating efforts among those invested in
conquering TANGO2 deficency disorder.

In 2024, we invested $100,000 in research


around the world bringing the total planned
investment to more than $860,000 since 2018.

RESEARCH IS AT THE EPICENTER OF FINDING A CURE

26 Researchers

21 Projects

16 Institutions

6 Countries

20
GET INVOLVED

Volunteer
Together, we can make a difference in the journey toward a
cure. The TANGO2 Research Foundation is currently seeking
volunteers for multiple committees. For more information
please email: [email protected]

Fundraise
TANGO2 Research Foundation-funded projects are searching
for ways to end the diagnostic odyssey for families to stop
metabolic crises before they can happen. We are rallying our
community to ensure funding for meritorious research projects
in our next research grant cycle. Please consider fundraising,
or making a donation or monthly donation today! For more
information about fundraising please email:
[email protected]

21
Connect with us

TANGO2RESEARCH

TANGO2RESEARCH
TANGO2RESEARCHFOUNDATION
TANGO2RESEARCH

WWW.TANGO2RESEARCH.ORG
[email protected]

Created by the TANGO2 Research Foundation Outreach Committee

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